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© 2009 Jennifer Allen [email protected] Anticipatory Grief: The Pea Under the Mattress and the Elephant in the Room Presented on 11/13/2009 by Jennifer Allen, LMFT, ATR‐BC & author of BONE KNOWING: A True Story of Coming to Life in the Face of Impending Loss www.jenniferallenbooks.com for resources and free podcast Disenfranchised Grief = grief that is socially/culturally unsupported (Doka 2002) Due to type of: relationship (ie. in‐law, same sex partner), loss (prenatal loss, anticipatory grief), griever (ie. child), death (ie. suicide) *also Hidden Grief (Kastenbaum 2004) ‐ Heath care workers hide grief due to feared perception of being ineffective & loss of objectivity. Anticipatory Grief - is a kind of disenfranchised grief that happens in anticipation of a loss and includes losses along the way. Examples include: Diagnosis of a life-threatening illness (self or loved one), Alzheimer’s, dementia, birth defect, going to war, post 911, living in war zone, being in a gang, being a health care provider for end-of–life care, domestic violence, pending divorce, suicidal loved-one, high‐risk behavior of loved one (drunk driving, unsafe sex). Myths & Realities Myth: Anticipatory grief replaces bereavement (after loss) Reality: Anticipatory grief can help orient one to grief and how to cope, as well as grieve many losses that happen along the way; however, once the person has died, there are new losses to grieve. Myth: Sudden loss vs. anticipated loss is correlated with PTSD. Reality: Both can be. Anticipatory grievers often manifest PTSD symptoms as they have been experiencing the “threat” of a loved one’s death for a length of time. Myth: Anticipatory grief automatically happens upon receiving a life‐threatening diagnosis (self or loved‐one) Reality: Not everyone engages in anticipatory grief (ie. denial), but those who do usually begin at point of diagnosis. Myth: Anticipatory grief (and post‐loss grief) manifests only as feelings. Reality: Anticipatory grief (and post‐loss grief) manifests in all areas of being: physical, spiritual, social, cognitive, behavioral, etc.

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Page 1: Anticipatory Grief - Home - Jennifer Allen Booksjenniferallenbooks.com/wp-content/uploads/2013/03/...Anticipatory Grief: The Pea Under the Mattress and the Elephant in the Room Presented

©[email protected]

AnticipatoryGrief:

ThePeaUndertheMattressandtheElephantintheRoom

Presentedon11/13/2009byJenniferAllen,LMFT,ATR‐BC&authorof

BONEKNOWING:ATrueStoryofComingtoLifeintheFaceofImpendingLoss

www.jenniferallenbooks.comforresourcesandfreepodcast

DisenfranchisedGrief=griefthatissocially/culturallyunsupported(Doka2002)

Duetotypeof:relationship(ie.in‐law,samesexpartner),loss(prenatalloss,anticipatorygrief),griever(ie.child),death(ie.suicide)

*alsoHiddenGrief(Kastenbaum2004)‐Heathcareworkershidegriefduetofearedperceptionofbeingineffective&lossofobjectivity.

AnticipatoryGrief­isakindofdisenfranchisedgriefthathappensinanticipationofalossandincludeslossesalongtheway.Examplesinclude:

Diagnosisofalife­threateningillness(selforlovedone),Alzheimer’s,dementia,birthdefect,goingtowar,post911,livinginwarzone,beinginagang,beingahealthcareproviderforend­of–lifecare,domesticviolence,pendingdivorce,suicidalloved­one,high‐riskbehavioroflovedone(drunkdriving,unsafesex).

Myths&Realities

Myth:Anticipatorygriefreplacesbereavement(afterloss)

Reality:Anticipatorygriefcanhelporientonetogriefandhowtocope,aswellasgrievemanylossesthathappenalongtheway;however,oncethepersonhasdied,therearenewlossestogrieve.

Myth:Suddenlossvs.anticipatedlossiscorrelatedwithPTSD.

Reality:Bothcanbe.AnticipatorygrieversoftenmanifestPTSDsymptomsastheyhavebeenexperiencingthe“threat”ofalovedone’sdeathforalengthoftime.

Myth:Anticipatorygriefautomaticallyhappensuponreceivingalife‐threateningdiagnosis(selforloved‐one)

Reality:Noteveryoneengagesinanticipatorygrief(ie.denial),butthosewhodousuallybeginatpointofdiagnosis.

Myth:Anticipatorygrief(andpost‐lossgrief)manifestsonlyasfeelings.

Reality:Anticipatorygrief(andpost‐lossgrief)manifestsinallareasofbeing:physical,spiritual,social,cognitive,behavioral,etc.

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Paradoxicaltasks:

Grieve/HopeAllowforanticipatorygriefprocesswhileholdinghope.Redefinehopeasneeded.

Cure/HealActtowardcure(treatment)whileattending“healing”(holisticsenseofwellbeing)

Plan/WaitPrioritize/balancefutureplans(ie.advanceddirectives,vacation).Takingcareofbusinessallowspresent‐timeliving.Also,lifecontinues,despiteillness.

Suppress/ExpressDiscernwhereanticipatorygriefandconversationwillbesupported.Usethissupport.

Needhelp/GettingHelpisStressfulCounterisolation&caregiveroverwhelmwithasupportnetworkstructuredtominimizeintrusion/tracking.

Helper/HelpeeTrustthatgivingandreceivinghelpismutual.Customhelpingpreventsfrustrationofhelplessness&receivingisoftennew“edge”

Knowingahead/DenyingUseknowledgeasacatalystnottowaittolive/plan,pepperingdenialintotemperoverwhelm/freezing.

Intimacy/disconnectUnderstandrelationshipchangesasillnessprogresses(lossesadjustedto).Intimacyatgreatheightsbutalsotimesofindifference/pullingaway.

ImplicationsforTherapy:PAVES

P­Psycho‐educateaboutanticipatorygrief,5stagesofgriefcanapplyinanticipatorygrief,lossesalongtheway,catch22’sandparadoxicaltasks.

A–Assessbyaskingclienthows/heexperiences(vs.feels)anticipatorygriefandlistenforcuesofintuitivevsinstrumentalstylesofgrief.Treataccordinglyandnormalize.

V–Validateclient’sexperience.Thisisimportantforanytypeofdisenfranchisedgrief.Oftenthoughts/feelingshavebeensuppressedtomaintainsociety’s“griefrules”.

E–Empathize–teachingempathyasself‐compassionvsself‐pityorself‐judgement.

S–Socialsupportvianetworkconcept&communityresources(caregivergroups,hospicecare,etc.).

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Catch22’sandtasks:survivalmode

disenfranchisedgrief

• Loved‐one is diagnosed with life‐threatening illness.   • Implica9ons of illness and death may include losses that trigger survival mode:  financial stress due to loss of income and medical bills, loss of house, loss of co‐parent, etc 

Result is a  need to begin preparing for survival during and aAer the loss and end‐

of‐life plans  

• A. Survival mode uses the “flight or fight” part of the brain, making it difficult to access the ( limbic) feeling part. Emo9onal processing is put on hold for lengths of 9me & hyper arousal stresses body = set up for caregiver breakdown. (Bowers 2009)    • B.Pa9ent and/or others may perceive caregiver’s focus on planning premature and as a loss of hope. This percep9on may also prevent both caregiver and pa9ent from geVng needed support. (ie. hospice)  

A. Intui9ve griever – stuck 

B. Instrumental griever ‐ stuck  • Sense of being “in limbo” not able to plan for future (due to implica9ons of giving up hope/foreshortened future) , while also having difficulty con9nuously being present  (grief feelings blocked by fear of impending loss)  

• Helplessness  

Task: hold hope and grief simultaneously. Enlist support that understands this  

 (hospice/support group/therapy ) 

Task: priori9ze & balance  future plans with present care (ac9on)   

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Helpingparentssupporttheirkidsthroughanticipatorygrief:

•Listen,reassureandanswerquestionshonestly(ageappropriately)•Keeproutineasmuchaspossible&discusschanges.•Invitetheirhelpwithcaringforpersonwho’ssick.•Allowchild’sleadoncontact/visitingwithpersonwhoissick.•Createasupportnetworkthatincludessupportforkids.•Encourageoutletsforsharingandexpression.•Letschool,church,coach(etc.)knowwhat’shappening.•Getsupportforyourself,soyoucanbestsupportyourkids.•Getinfo.onlocalsupportgroupsforkids(ie.ExpressGroupsforYouth,goto:www.jenniferallenbooks.com)

Bibliotherapy:Story,likeart,isasafeentryintodifficultissues.

Onceyouarefamiliarwithstory,youcanrecommendclientslistentoapplicablechaptersbetweensessionsasacatalystforworkingonsimilarissuesintheirownlives.BoneKnowingaddressesthefollowingissuesthroughstory:

•Anticipatorygrief(chapters1­30)•Coping(successfulandfailedefforts­throughout)•Suicide(chapters4&8)•Substanceabuse(chapter6)•GettingHelp(chapters12&15)•Spiritualcrisis/transformation(throughout)•Miscarriage(chapter9)•Intuitionvs.reason(throughout)•Hospice(chapters14,19,20,&30)•End­of­lifeissues(chapters14&17)•Dyingprocess(“Days”section)•Deathrituals(31­34,36&Epilogue)

Websiteresources:www.jenniferallenbooks.com

•Freepodcastsofindividualchaptersforlistening(oncomputerordownloadtoipod)•Catalystquestionsfordiscussiongroups•Blogavailableforopenforumdiscussion•Bibliotherapybooklists(PDF)foranticipatorygrief&bereavementforadults&children•Article(PDF)onsettingupasupportnetwork•Article(PDF)onanticipatorygrief•Howtotalktochildrenaboutalovedone’sseriousillness

Wantmore?*FridayMorningExpressCEUs(4)on:AnticipatoryGrief/UsingArttoHelpKidsThroughGrief/UsingArtinTherapyspacelimitedto6.Begins1/10

Bowers,Duane(2007)Grief:Immediate,PracticalandEffectiveInterventions.CMIEducationInstitutePresentationCable,DanaG.&Martin,Terry,L.(2007)CounteringEmpatheticFailure,SupportingDisenfranchisedGrieversinDoka,KJ.(Ed.)LivingwithGrief:Before&AftertheDeath.HospiceFoundationofAmerica,Washington,D.C.Doka,K.J.(Ed.)(2007)LivingwithGrief:BeforeandAftertheDeath.HospiceFoundationofAmerica,Washington,D.C.Doka,K.J.(Ed.).(2002).DisenfranchisedGrief:Newdirections,strategiesandchallengesforpractice.Champaign,IL:ResearchPress.Kastenbaum,R.J.(2004).Death,SocietyandHumanExperience.(8thEd.)NeedhamHeights,MA:Allyn&Bacon.Rando, T.A. (1997) Living and Learning with the Reality of a Loved One’s Dying: Traumatic Stress and Cognitive Processing of Anticipatory Grief. In K.J. Doka (Ed.) Living with Grief: When Illness is Prolonged. Washington, D.C.: Hospice Foundation of America Smith,Douglas(2009)DifferentWaysofGrieving,DifferentWaysofHealing.CMIEducationInstitutePresentation


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