GRIEF AND MOURNING Loss in a Paediatric Context Who grieves? • Parents • Siblings • Grandparents • Significant others • School and activities friends • A large community • Care providers A Parent’s Loss; • part of own sense of self • connection to the future • unfulfilled expectations & ambitions • some of own treasured qualities/ abilities • source of love and acceptance • sense of power and control over what happens to them • social status and contacts • Celia Hindmarch “She was my child… and she still is Don’t keep telling me what you think I am doing wrong. I’m doing it my way. It’s the only way I know how…” Beyond Words, Skylight, 2012 Anticipatory Grief • Normal mourning when facing a death • Can be as intense as grief after the death • Varies in intensity • May not occur especially in strong denial Stages of Anticipatory Grief 1. realise death is eminent- sadness depression 2. concern for dying child- regrets, anxieties 3. rehearse death-concerns, fears, planning 4. imagine life afterwards; anniversary, stuff, grieving Manifestations of Grief Manifestations of Grief Emotional • Shocked, stunned, sad, desolate, afraid, lonely, let down, overwhelmed, helpless, regretful, angry, guilty, relieved, sense of injustice, numb, empty, drained Physical • Crying, moaning, agitated, exhausted, sleeping changes, central constriction; dry mouth, tight chest, stomach ache, digestive issues, nausea, nervous laughter, more illness and accidents, sensory sensitivity Skylight2012 Manifestations of Grief Mental • Blank, confused, forgetful, distracted, slow responses, difficult to make decisions, replaying, preoccupation, difficulty switching off, blaming, different world view, overwhelmed; too hard Social • Needing to talk over, avoiding talk, wanting people or not, difficulty with commitments, changed reactions to touch, hurting others, differing family relations, risk taking • Skylight2012 Manifestations of Grief Spiritual • Sensing the presence of the child who has died, asking why, seeking beliefs or turning away from them, praying or abandoning prayer, seeking nature, looking for meaning • Skylight2012 “Inside this Shell of Mine” Nancy Bright “Aside from offers of absorbent products, what do we have to offer each other? My mother was a pragmatic girl who finally told me a safe place to grieve was lying on the floor. She said that on the floor, ‘there’s no place to fall.’ She was right. My body would collapse from the howling and it would curl itself up on its side on the wood floor like a salted slug, and the floor would not drop me. I still feel the smooth wide boards of the kitchen floor against my cheek; its cool bones against my heated ones.” THE WHIRLPOOL OF GRIEF Words of Loss • Bereavement is what happens to you • Grief is what you feel • Mourning is what you do • Celia Hindmarch Contexts • culture • community • religion, spirituality • male/ female • environment • concurrent stresses • history • society And then there is Media Tasks of Grieving William Worden • to accept the reality of the loss • to work through the to the pain of grief • to adjust to an environment in which the deceased is missing • to emotionally relocate the deceased and move on with life Alan Wolfelt • Acknowledging reality of the • • • • • loss Embracing the pain of the loss Remembering the person who died Developing a new sense of identity Searching for meaning Receiving ongoing support from others Practical Advice for Mourners • Eat healthy, drink water, rest and sleep and exercise • Talk to a trusted person, be with good people who care • • • • • • about you, be by yourself Ask for what you need, be honest It’s ok to grieve, cry, not cry, feel what you feel Talk with people who have been there, don’t cut off permanently Listen to music, go to nature, get creative Have massage, hugs, treats Keep safe, get help, forgive self, be patient • Skylight2012 Transition • A new sense of self • connecting to the deceased • inner representation • identification • incorporation • rituals, remembering • “death is a transition not an illness” Phyllis Silverman Reconciliation • Making friends with grief • Carrying on without physical presence • New sense of meaning and purpose • Hope and commitment to future • An ongoing journey Advice • Allow yourself to mourn • Watch out for cliches • Your grief is unique • Develop a support system • Allow yourself to feel • Embrace your treasure of numb • This death is out of order • Expect to feel a multitude of emotions • Be tolerant of your limits • Talk about your grief memories • Gather impt keepsakes • Embrace your spirituality • Move toward your grief and heal • Dr Alan Wolfelt Risk factors • who the person was • nature of attachment • mode of death • history • personality • social context • concurrent stresses Masculine Style • Quieter, less visible • Less connected with past, more with future • Less passive, more aligned with action • Not as well accepted “When a woman feels lost, she tends to ask for help. When a man feels lost, he looks for a map” Tom Golden Grandparents • “a grandparent’s grief is like a fork with two tines—one representing the loss of a grandchild, the other representing the pain of your own child’s suffering.” • M.H.Gerner-”For Bereaved Grandparents” • Listen to your bereaved child • Talk about your grandchild • Consider your needs • Survivor guilt & anger • Hope for a better day Siblings Charter We need to respect their rights to; • Bereavement Support • Express feelings and thoughts • Remember the person who has died • Education & information • Appropriate and positive response from school • Voice in impt decisions • Everyone involved • Meeting others • Established routines • Not to blame • Tell their story • Winston’s Wish 2003 What do Children Understand? • age • environment • experiences • personality • family coping Sara Fleming, NP Concepts of Death • Separation (age 5)-dead people do not co-exist with the living • Causality (age 6)-death is caused by something, be it trauma, disease, or old age • Irreversibility (age 6)-a dead person can not ‘come alive’ again • Cessation of bodily functions (age 6) • Universality (age 7)- all living things will die • Insensitivity (age 8)-the dead can not feel fear or pain • RCH website Sara Fleming, NP What do Children Understand? • Environment • Physical • Social • Cultural • Emotional Sara Fleming, NP What do Children Understand? • Experiences • Personality • Life journey • Responses to stress • Sex • Capacity to adapt • Bonding Sara Fleming, NP What do Children Understand? • Family Coping • Extent of crisis • Collective behaviours • Communication style • Alliances • Resources Sara Fleming, NP Age Grief Response Companioning Infants and Toddlers Baby-2 years • “I’m upset”; cry, thumb suck • Physical comfort • Change in normal patterns • Accept, get routine in sleeping, eating, fussing Loss= absence Preschoolers 3-6 years Death may be thought of as temporary and/or reversible Grade Schoolers 6-11 years • May not understand new feelings, unable to verbalise • Ask ? About death over and over. Reenact death in play • Regress- potty, sucking, baby talk • Provide terms for feelings • Answer concrete & lovingly. No half truths • Death play ok, join in and offer guidance • These are normal. Offer presence and support • Express grief primarily through play • May “hang back” socially, scholastically • May act out because they don’t know how else to handle their grief • Use “older kid” play therapy • Permit to take time to mourn, give them time • Offer venting alternatives. Support groups can be helpful. Alan Wolfelt-Companioning the Grieving Child Age Grief Response Adolescent 12 years and up • May protest the loss by acting • Tolerate if no-one is out/ withdrawing being harmed. Withdrawal is normal short term only. Understand death cognitively but are only beginning to grapple with it spiritually Companioning • May feel life has been unfair to them, act angry • Normal egocentrism. After he has had time to explore this, encourage to consider the impact on his larger social group. • May act out a search for meaning, test his own mortality • Teens explore the “why” about life and death. Encourage search unless it may harm Alan Wolfelt-Companioning the Grieving Child Sara Fleming, NP When a sibling dies Layers of loss Survivor Feelings • an ally • Guilt • a companion • a carer, a dependent • Relief • an identity • innocence • Fear • routine, normality • balance • Confusion • Wolfelt Behaviour • acting out • withdrawal • disobedience • insecurity • inattention • sleep disturbance • appetite changes • sensitivity, fears Sara Fleming, NP What helps? • Information, answer questions • involvement, funeral etc • discussion about loss • normality, play • special time, • meaningful memory making and rituals • peer and school support • external support • working with the parents/carers Sara Fleming, NP Memory making and rituals • Treasure box • Conversation • Plant tree, garden • Ongoing activities • Christmas decoration • Anniversary actions • Drawing • Special places • Photo collection • Mealtimes • Touchstones • Sad, mad, glad space • Poetry, music • activities • Star naming Talking with Children • our own anxieties, helplessness • talking to becomes with • repeat information • reassurance, trust, security • right place, right time, right person • not what you say but how you say it! Sara Fleming, NP How you say “it” • talk at eye level • speak directly to and with the child • avoid confusing language and double meanings • avoid cliches, platitudes • keep it short and simple- repeat • check the child’s understanding • be truthful & honest- share your feelings • keep them informed & talk open - Earl Grollman 1990 Sara Fleming, NP Carpe Diem Acknowledge the reality of the loss Feel the pain of the loss Alan Wolfelt • Talk about the physical reality of death- may sure they understand how and why the person died • Next time they cry, hold gently and let then cry as long and hard and often as they want to • Invite to share a memory, or ask Remember the person who died to show photo of who died then tell you what was going on when pic was taken Carpe Diem • Develop a new self-identity Alan Wolfelt • Ask child to draw 2 pictures; of his life before and after the death, talk about differences. • Search for Meaning • Receive ongoing support from caring adults • Include Child in Funeral • Share your beliefs without pressure for child to believe what you do. • Create a plan to help, mark dates to contact and spend time, mark important dates • If funeral done, talk about ceremony answer ?, discuss ongoing way to honour who died. Carpe Diem • Help child choose a keepsake Alan Wolfelt • Talk about keepsakes, ask about a chosen one’s significance or help plan to chose/ procure one • Give permission to find comfort in linking objects • Consider child’s relationship to the person who died • Do they have one? Talk about this, affirm need to have and hold this. • Think about this from her point of view. Set aside your thoughts and feelings and enter her world as you consider this point. Schools • inform of child’s loss • identify others at risk • provide simple information with permission • support staff • written resources + online • develop memorial/ritual • set up liaison with education department supports Sara Fleming, NP Others • Extended Family, friends • Facebook contacts • Neighbours • Community groups • Sometimes need some help here Risk Factors • Nature of the Loss • traumatic, • Unexpected • Features of Child • Psyche disorder, multiple losses, adolescent,<5years • Nature of Relationships • Ambivalent, low family support, father of teen boy, mother of young child • Aranda.S, Milne,D, Sara Fleming, NP Sara Fleming, NP Resources • NALAG, Grieflink • Child and Youth Health website • SIDS and Kids, SANDS • RCH Palliative Care website • Compassionate Friends • Skylight, NZ • Starbear (S.A.), Anglicare Loss and Grief Centre • Journeys folder- PallCareAus website • Disease base associations 9/04/2015 Books Sara Fleming, CYWHS Questions If ever there is tomorrow when we’re not together… There is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think, but the most important thing is, even if we are apart… I’ll always be with you. A.A.Milne