Presentation 218 sabrina schalley anticipatory grief in als families

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  1. 1. ANTICIPATORY GRIEF INALS FAMILIESSabrina M. Schalley, LCSWPatient Services DirectorALS in the HeartlandNovember 2014
  2. 2. MY HISTORY: Academic: Licensed, Clinical Social Worker since1995 Professional: Twenty years of counselingexperience in the field of grief and loss; CertifiedGrief Recovery Specialist in 2011 Personal: I have been honored to have been theprimary caregiver for a beloved family memberdiagnosed with a terminal illness ALS Experience: Six years as the primary SocialWorker for over 200 patient families
  3. 3. WORKSHOP OBJECTIVES: Learn the principals of Anticipatory Grief; Comprehend how Anticipatory Grief impactsfamilies touched by ALS; Develop an understanding of when and how tocounsel families on this issue; and Increase feelings of preparedness to addressAnticipatory Grief with patient families in practice.
  4. 4. DEFINITION OF TERMS:Loss = Change = Grief Grief: the physical, psychological, spiritual,cognitive, and behavioral responses to the(perceived) threat of a loss Mourning: the outward expression of grief Bereavement: the state of having suffered a loss
  5. 5. ANTICIPATORY GRIEF: Response to awareness of a life-threatening orterminal illness in oneself or a significant other andthe recognition of associated losses Rando, TA, ed (2000)
  6. 6. ANTICIPATORY GRIEF:(in normal language) Is what happens when you know there will be a loss, butit has not yet occurred. This is what occurs when you or your loved one isdiagnosed with a terminal illness and have time toprepare. Unlike bereavement after a death, anticipatory grief isexperienced by both the person who is ill and by theother family members. This grief process has a clearly defined beginning; italso has a definite ending. Unlike bereavement, anticipatory grief can include aperiod of hopefulness when the disease is beingeffectively managed.
  7. 7. ANTICIPATORY GRIEFPotential losses associated with illness: Loss of body control Loss of hopes, dreams Loss of employment/finances Loss of independence and control Loss of feeling of self-worth Loss of role in the family Loss of love Loss of stability and security
  8. 8. FACTORS THAT INFLUENCE THE INTENSITY OFANTICIPATORY GRIEF MAY INCLUDE: The nature of the relationships between familymembers The importance of the role the person who is illplays in each family members life The quality of life the family has experienced sincethe diagnosis was made The length of the illness and the burden ofcaregiving The way the family copes with sorrow, change, andloss The ability of the family members to communicatethoughts, feelings, and needs to each other
  9. 9. FACTORS THAT INFLUENCE THE INTENSITY OFANTICIPATORY GRIEF MAY INCLUDE: The amount of support the family gets fromrelatives, friends, and the community in general The familys cultural, ethnic, and religiousbackground The health of the other family members The presence of other stressful situations within thefamily (e.g., financial problems, strainedrelationships, single parent households, etc)
  10. 10. FAMILY RELATIONSHIPS: A terminal disease like ALS has the power tostrengthen healthy family relationships or shatteralready weakened ones. The constantly changing abilities, roles, andphysical appearance of the person who is ill putstremendous strain on each family member.
  11. 11. AND, EVEN MORE:People in certain situations must often cope withextra pressures: Newlyweds who are still establishing a maritalrelationship Families with changed financial conditions, socialstatus, and usual responsibilities Families where there has been a divorce People who must make major life decisions beforethey may be ready People who have had difficult or uncompletedprevious loss experiences
  12. 12. AND, EVEN MORE CONTINUED Couples with dependent children Adolescents In general, this age child has difficulty indealing with a degenerative disease like ALS Young children Change and the disruption of normalroutines may upset young children People who receive an inaccurate prognosis. If theperson dies too soon, the family may feel angry anddeprived. If the person survives past the predictedspan, fatigue or stress may cause difficult feelings.
  13. 13. ANTICIPATORY GRIEF SYMPTOMS:The emotions that accompany anticipatory grief are similarto those after a loss, but can be even more like a rollercoaster at times. Some days may be really hard. Otherdays you may not experience grief at all. Sadness and tearfulness Fear Including not just the fear of death, but fear aboutall the changes that occur. Irritability and anger Both in the patient and thecaregivers. Loneliness A sense of intense loneliness is oftenexperienced. Unlike grief after a loss, the feeling that itsnot socially acceptable to express anticipatory grief canadd to feelings of isolation.
  14. 14. ANTICIPATORY GRIEF SYMPTOMS CONTINUED: Desire to Talk Loneliness can result in a strongdesire to talk to someone, anyone, who mightunderstand and listen without judgment. Anxiety When you are living in a life & deathreality, its like living in a state of heightened anxietyall of the time. Anxiety in turn can cause physicalsymptoms such as tremulousness and shaking. Guilt For some people the time prior to a lovedones death can be a time of great guilt. You longfor your loved one to be free of pain (and hence,die), yet you fear the moment that death willactually happen. You may also experience survivorguilt that you can continue on.
  15. 15. ANTICIPATORY GRIEF SYMPTOMS CONTINUED: Intense concern for the person dying. Rehearsal of the death Family members may findthemselves visualizing what it will be like to havetheir loved one gone. Or, for the patient, visualizinghow your loved ones will carry on. Physical Problems Such as difficulty sleeping andmemory problems. Fears of loss, compassion, and concern in children Studies have found that fears about what is goingto happen and how they would be cared for werevery strong in children.
  16. 16. ANTICIPATORY GRIEF BENEFITS(YES, THERE ARE SOME!): The chance for important, delicate conversations Ability and time to let go of regrets held with orabout your loved one Take the time to make amends with your loved one,and to tell him/her how you feel about them You can let go of anger or guilt Make plans for the future deal with financialchanges, tax issues, insurance, a will, and funeralarrangements Leave a legacy tell your life story in your ownspecial, unique way
  17. 17. ANTICIPATORY GRIEF CHALLENGES: Witnessing your loved ones struggle with death As conditions worsen, you may grieve with eachdownturn Experience senses of helplessness and hopelessness May feel like you are living with a pit in your stomachthat wont go away Attempting to cope with fear may cause personalitychanges from day to day, or even moment to moment Perhaps the most difficulttolerating living in a state ofemergency for an extended period of time. The mindcan only tolerate so much angst.
  18. 18. SUPPORTING FAMILIES FACING ALSEASE Model Educate Assess Support Explore Needs/Strengths Carrington, NA, Bogetz, JF (2004)
  19. 19. THE EASE MODEL: EDUCATE Normalize grief as a natural response to loss Identify the range of typical responses Allow for individual differences
  20. 20. THE EASE MODEL: ASSESS Physical health Emotional/mental health Spiritual needs/strengths Behavioral/social changes Loss history Risk for complicated grief
  21. 21. THE EASE MODEL: ASSESSQuestions to ask: What concerns you most right now? What brings you comfort? What does your experience look and feel like? Who do you talk with? What behavior changes are you seeing in yourchildren?
  22. 22. THE EASE MODEL: ASSESS Emotional/Mental Health History of mental health issues Common response: inability to concentrateand/or forgetfulness (I feel like Im going crazy!) Roller Coaster of emotions
  23. 23. THE EASE MODEL: ASSESS Spiritual Needs/Strengths Religious or TheologicalProvidence, fate, Gods WillAfterlifeSuffering or redemptiveSupport of religious community ExistentialMeaningPurpose
  24. 24. THE EASE MODEL: ASSESS Behavioral/Social Changes Family Financial Status/Employment Impact on children in the family Loss History Previous losses, including non-death related Recent secondary losses (financial, home) Disenfranchised (socially taboo) losses Cumulative losses Inability to grieve prior losses
  25. 25. THE EASE MODEL: ASSESS Risks of Complicated Grief Predictors:Violence of the deathAbility to make sense of the death Length of time that symptoms have persisted Extent of interference in daily lifeExtreme isolationAbrupt major lifestyle changes Intensity of symptomsSuicidal ideationSevere depression
  26. 26. THE EASE MODEL: SUPPORT Be present and available Communication Need for short, frequent conversations Honest and authentic responses Realistic life expectancy Decision-Making Goals of Care
  27. 27. THE EASE MODEL: SUPPORT Coping Problem-focused coping and positive reappraisalmost effective strategies in maintaining anoptimistic attitude Life Review/Legacy
  28. 28. THE EASE MODEL:EXPLORE NEEDS AND STRENGTHS Perception of Support Family Community Communication Preference Coping Skills Changes over time
  29. 29. ANTICIPATORY GRIEF: FINAL THOUGHTS Accept that Anticipatory Grief is Normal You are normal and feeling grief before a death isnormal. You are allowed to feel this type of grief.Seriously. You are not alone. Acknowledge the Losses People may say annoying things that minimize what ishappening. Consider journaling or other creativeoutlets to express emotions around things likeacceptance of the impending death, loss of hope, lossof the future imagined, etc Connect with Others Seek out support groups in the area or online.
  30. 30. ANTICIPATORY GRIEF: FINAL THOUGHTS Remember that Anticipatory Grief doesnt