grief and mourning loss in a paediatric context. who grieves? parents siblings grandparents...
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GRIEF AND MOURNINGLoss in a Paediatric Context
Who grieves?• Parents• Siblings• Grandparents• Significant others• School and activities friends• A large community• Care providers
A Parent’s Loss;
“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 sensitivitySkylight2012
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
Contexts
• culture• community• religion, spirituality• male/ female• environment• concurrent stresses• history • society
And then there is Media
Tasks of GrievingWilliam 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• Your grief is unique• Allow yourself to feel numb
• This death is out of order• Expect to feel a multitude of emotions
• Be tolerant of your limits• Talk about your grief
• Watch out for cliches• Develop a support system• Embrace your treasure of 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
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 ToddlersBaby-2 years
Loss= absence
• “I’m upset”; cry, thumb suck
• Change in normal patterns in sleeping, eating, fussing
• Physical comfort• Accept, get routine
Preschoolers3-6 years
Death may be thought of as temporary and/or reversible
• 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
Grade Schoolers6-11 years
• 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 Companioning
Adolescent12 years and up
Understand death cognitively but are only beginning to grapple with it spiritually
• May protest the loss by acting out/ withdrawing
• May feel life has been unfair to them, act angry
• May act out a search for meaning, test his own mortality
• Tolerate if no-one is being harmed. Withdrawal is normal short term only.
• Normal egocentrism. After he has had time to explore this, encourage to consider the impact on his larger social group.
• Teens explore the “why” about life and death. Encourage search unless it may harm
Alan Wolfelt-Companioning the Grieving Child
When a sibling dies
Layers of loss
• an ally• a companion• a carer, a dependent• an identity• innocence• routine, normality• balance
Survivor Feelings
• Guilt
• Relief
• Fear
• Confusion• Wolfelt
Sara Fleming, NP
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• Plant tree, garden• Christmas decoration• Drawing• Photo collection• Touchstones• Poetry, music• Star naming
• Conversation• Ongoing activities• Anniversary actions• Special places• Mealtimes• Sad, mad, glad space• activities
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 Alan Wolfelt
Acknowledge the reality of the loss
Feel the pain of the loss
Remember the person who died
• 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 to show photo of who died then tell you what was going on when pic was taken
Carpe Diem Alan Wolfelt
• Develop a new self-identity
• Search for Meaning
• Receive ongoing support from caring adults
• Include Child in Funeral
• Ask child to draw 2 pictures; of his life before and after the death, talk about differences.
• 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 Alan Wolfelt
• Help child choose a keepsake
• Give permission to find comfort in linking objects
• Consider child’s relationship to the person who died
• Talk about keepsakes, ask about a chosen one’s significance or help plan to chose/ procure one
• 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
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
Sara Fleming, NP
21/04/23 Sara Fleming, CYWHS
Books
Questions
If ever there is tomorrowwhen we’re not together…There is something you mustalways 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
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