152nd Phase of Bereavement Very sensitive to stimuliAngryGuiltyRestless / impatientAmbiguousTesting what is realIrritabilityWeight gain/lossSleeping difficultyAching armsBitternessHeadachesResentmentPalpitationsLack of strength
214 tasks of mourning To accept the reality of the loss To work through the pain of griefTo adjust to life in which the deceased is missingTo emotionally relocate the decease and move forward with lifeWorden, J.W. (2002) Grief Counseling & grief therapy (3rd edition) New York: Springer Publishing.
22Experts agree that grief is somewhat predictable as far as its elements, but the length, and intensity of the phases of the process remain undetermined. Each individual’s response is unique. It is vital that health care providers recognize grief, in its varying phases, because behaviors can often be misinterpreted as disinterest, lack of importance, belligerence, and so forth. Parents and family members need to be taught about grief and mourning so that they are better able to recognized the signs in themselves and others. Grief work should be encouraged.
23Responses to perinatal loss vary widely, but for many families,the loss is unexpected and theydo not know what to do,what to expect, or how to handletheir grief.
24Grief work or mourning requires tremendous effort.
25Incongruent grief feminine Open expression Sad, depressed Empty feelingNeed to talkComforted by holdingmasculineStoicAggressive, angerPowerlessTask orientedSexual intimacyNeeds partner to feel better
26The experience of grief is highly individualized and gender specific The experience of grief is highly individualized and gender specific. As can be seen in many ways, men and women respond differently to the same situation. Men often deal with their grief by keeping busy with their work; women cry and talk. Both parents are in emotional pain, but their emotional attachment to their baby is likely at different points and they respond according to social expectations. The woman had an intimate relationship with the pregnancy as part of her own body, but the father experienced pregnancy as an observer.
28Feminine griefWomen may feel responsible for her body and her pregnancy.When pregnancy results in loss, the mother may feel that she has failed and is somehow responsible for what has happened.Women often ask “why us?” and “what did I do wrong?”
30Men and women grieve differently Men and women grieve differently, which can sometimes cause conflict between partners. Women tend to grieve longer than men; they also have physical changes to deal with after the loss. Grieving may last a few weeks, several months, or often, longer than a year. Some feel that grieving never ends but changes in intensity and focus over time.
31Grieving the death of a baby may create tension and problems in many relationships. Time spent with the baby by each parent after delivery may also differ, adding another layer of difference., Incongruent grieving is normal in most cases, however, and parents need to be told this. Past loss experiences may also change each parent’s response to this event.
32After several weeks, the focus of a couple’s life should begin to move from their grief as all encompassing to the incorporation of their loss into their daily lives with periodic eruptions of sadness. Even when couples feel that they are doing pretty well, they will likely be surprised by the intensity of their response to anniversary dates of their due date, birth date, delivery date and other milestones
33Parents who lose their wished for baby feel like parents, but have no living child to parent. Therefore, unfortunately, they are often not treated like parents by society. The unborn baby or newborn is not usually known to others beyond the mother, her partner and perhaps immediate family. Because of the baby’s short, relatively hidden existence and a limited circle of acquaintances, there may be few mourners who can share the grief with the parents. Death tends to be a taboo topic in our society, even more so when it is a baby that dies. From the parents’ prospective, they had been looking forward to a life with this baby, and now that future, too, is lost.
35Normal thoughts of siblings: “did I cause the death?”“will the rest of my family die, too?”“will I die, too?”“I feel guilty to be happy or laugh.”“who will take care of me now?”“why wasn’t it me?”“If God took her because she was so good, will he take me, too?, I’ve been good?”
36Children and death Commonly asked questions: Should we include the children?Who should tell the children?How do I tell the child what has happened?Who will care for the children?What if I cry in front of the children?
37How to talk to children about death Encourage the child to talk openly about feelingsAllow expression of feelingsSupport expression of emotions appropriately to grief and deathHelp children deal with their feelings and emotions
38Telling a child about a loss Communication through touch ( arm around child, sit close to child, hold on lap or hold hands)Talk about things the child experienced or noticed already (pregnancy, parents crying)Tell child what to expectAcknowledge and share feelingsExplain death in an understandable manner (simply and honestly)When appropriate, let child make decisions to attend funeral, etc..)Encourage child to ask questions
40Grandparents’ grief Instinct to protect their children from pain Unmet expectationsGrandparent’s feelings go unnoticed“trigger” past lossesMiles separate familiesHard to understand parent’s needs
41Grieving is not a process of forgetting, but a process of remembering.
42Creating memoriesThe moments or hours surrounding stillbirth or neonatal death are precious.Work at creating memories for this family so they can know and remember their lost baby.The care you provide now will help them with later grief work.There is rarely an opportunity to go back and retrieve memories.Do not rush: consider how important the brief time the parents have with their baby is. Relative to the fact that they had expected and looked forward to spending a lifetime together as a family.
57Cardinal rules of grief support SilenceAdmit our own helplessnessBe genuineBe with the person in griefDon’t judge another’s griefBe clear about your issues on deathKnow your limitations
583 types of responses to perinatal death AvoidanceInsensitive or moralizingsupportive
59How can I help someone who is grieving? ListeningSending cardsCallingRemembering the babyMaintaining beliefOffering hope & support
60Examine defenses and coping styles Develop trustPast coping strategiesPast lossesUse of substancesAssessing family, friends, community support
61What do you say……… What do you say when a baby dies and someone says…… “at least you didn’t bring it home”What do you say when a baby is stillborn and someone says….“at least it never lived”What do you say when a mother of three says…….“think of all the time you’ll have now”
62What do you say when so many say….. “you can always have another…”“At least you never knew it…”“You have your whole life ahead of you….”“You have an angel in heaven….”What do you say when a baby dies and someone says……nothingWhat do you say when someone says….“I’m sorry.”You say, with grateful tears and a warm embrace,“Thank you!”Kathie Mayo
63Qualities of a good listener Silence- allow for pauses in conversationNon-committal acknowledgement- (“um”, “uh huh”, “I see”, “really”)Door openers- open ended questions-“could you tell me more?”“when did you notice this change in your emotions?”“How are things going with your family?”“Tell me about it?”“What helps you get through the day?”Content paraphrasing- (i.e., what I hear you saying, is…)Reflective listening- partially restating what was saidActive listening- requires validation. Reflection of feelings relative to the content (i.e., “you’re sounding pretty angry about______. Is that right?”
64Parenting means taking care of one’s children, so it is not so surprising that parents may feel that they have failed their child. Caregivers should be especially careful not to add to their burden by asking questions that imply responsibility or by saying thing that could be misunderstood as indicating that the death could have been avoided if the parents had done or not done something
65Providing sensitive care Be patientProvide privacy, but don’t avoid the coupleCompassionate care and guidanceBe prepared to answer questions that ariseOffer optionsPrepare them for what is to comeYour approach to care and the couple’s decisions will be their only memories of their child’s birth
66Thing you can say: “I’m sorry” “this must be hard for you” “ I just don’t know what to say”“how are you doing with all of this?”“I’m sad for you”“I’m here, and I want to listen”
67What not to say “you can have other children” “you have an angel in heaven”“you’re young, you can have more”“this happened for a reason”“at least it happened early”“I know just how you feel”“you can always have another baby”“this will bring your family closer”“at least you have other children”Calling the baby a “fetus” or “it”
68Spiritual needs Individualize care Ask each family what they would likeOffer to call in a clergy member, Rabi, or other individualsListen to the couple’s interpretation of the meaning of deathExpress your willingness to support their needsRecognize that fetal personhood, naming, and rituals are often religiously dictated.
69Provide continual support follow up:Perinatal bereavement programSupport groups (at VBMC, online)Ceremony of remembranceWalk to rememberHANDS memorial garden
71Complicated bereavement Identify problemsIdentify poor coping skillsIdentify inability to meet physical needsIdentify an increase substance abuseIdentify self- destructive impulses
72Complicated bereavement Identify:Lack of support networkIsolating selfLoss is not discussedLoss is negatedRadical changes in lifestyle
73Red flags for major depression 15-20% loss or gain in weightWorsening of symptoms over timeReclusive nessPersistent suicidal thoughtsInability to perform the necessary tasks of livingHistory of mental illness
74Identify pathology and refer Identify troubleKnow when to referKnow your limitations
75Pregnant again…. concerns: Fertility and sexualityCan I allow myself to feel joy again?Reminder of past pregnancy and lost babyDisloyal to other babyTicking biological clockWhat if…..When is the best time? Each person must decide for themselves.Desire to have another baby overrides fear of another loss
76Support during pregnancy after loss It is important to discuss her past experiences and her current level of anxiety.Ask parents to tell their stories, if appropriate.Review obstetrical historyReferring to the baby who has died, by name, demonstrates your acknowledgment of that baby’s personhoodIf possible, put the parents in a different room than the one they used for the previous pregnancy.
77Thoughts for Caregivers When healing of the body is no longer our hope,We request a special healing of the spirit and soul.When continued life is not a reasonable goal,We hope for a good and meaningful death to take its place.Help us to measure success not so much in healing,As in caringAnd help us to see that a job well done may not belonger life, but a fitting death.Dispel the myth for us that joy is in life alone.Help us to overcome the fear of our own death,So we can be close to the dying in our service to them.Give us the resources on which to draw for help,through the really bad times.And help us to be open to receive what thosewhom we serve have to give us in this journey.In and through it all,May we never lose a sense of our compassion.
78Avoiding “burnout” Know thy Self Be able to listen with your heart as well as your headKnow your boundaries and limitationsBe able to ask for what you need and wantBe able to say “NO”Be able to separate your own grief issues from your patients.Realize you are not perfectBe able to facilitate problem solving and let the patient make the decisionsBe able to laugh and playClosureRemember, self care is self esteem