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