Transcript SUPPORTING YOUNG CARERS WHEN A LOVED ONE IS …

SUPPORTING YOUNG
CARERS WHEN A LOVED ONE
IS TERMINALLY ILL
Christine Comacle-Smith
& Jenny Leitch
Crossroads Caring For Carers
“BIG DYING and LITTLE DYING”
From early childhood loss is a constant feature of our lives:
• Moving house
• Changing school
• Falling out with friends
• Loosing and breaking toys…
“when I talk about dying, its on two levels. There’s big dying
and there’s little dying. We are always losing and finding
things, always breaking with the old and establishing the
new. That’s the little dying. My experience…….is that big
dying is like little dying, at least in terms of process and
feelings. Our little dyings are meant to teach us what our
big dyings may be like”. (Stanley Keleman)
QUESTIONS
1. What are you hoping to learn from this
session?
2. What are the questions you would like
answered?
CASE STUDY
In your group, please try to answer the
following questions
(10 minutes)
1. What kind of emotions and reactions
could Janice be experiencing?
2. What support do you think she needs?
3. How could this family be helped?
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Anticipatory grief
Children’s awareness of death
Preparing children for a death in the family
Religion and death
How do children grieve?
Helping children to talk
Referring children for specialist help
Caring for ourselves
Activities
Approximately every 30 mns, a child is bereaved
of a parent in the UK
• Children have the right to know
• Children need time to get used to the idea
• Children need to say their goodbyes
• Children need support to see the person who is
ill at home or at the hospital or hospice
• Children need to be involved according to their
age and understanding
• Children need to included in the planning and
attend funerals
Anticipatory Grief
Lindermann (1944): study on wives emotional detachment
with husbands away during Word War 2
Saunders (1982): adult study on effect of bereavement
shortly after death and again after 18 months found that
after a short term chronic illness, bereavement was
reduced in intensity compared to sudden death or a long
term chronic illness.
Worden (1986): anticipatory grief + mourning process begins
early
Rando(1986): it does not reduce the time spent grieving after
death.
Children’s awareness of death
• Long before we realise it, children become
aware of death by:
Observing their environment
Watching TV
Listening to fairy tales
Play acting
Death is part of every day life.
Developmental stages in their
understanding of death
• Preschool children:
See death as reversible, temporary and impersonal
• Between the ages of 5 – 9:
Begin to see death as final and all living things must die.
But still see death as impersonal
• From 9/10 through adolescence:
Understand that death is irreversible and that they will die
too someday.
Begin to work on developing philosophical views of life and
death
Stages helpful to understand how children perceive death
but we cannot generalise
Preparing children for death in
the family
Parents want to protect their children. They think that by not
talking about it, their children won’t be affected and will
therefore not need to worry
However it is more helpful to talk about death so children
feel included and valued
It helps children to be prepared so that when death
happens it is not so much of a shock
It also make it easier for parents to be more open
whenever their children are around
The easiest way to talk to children about death is by being
direct, clear and honest.
Marjorie Mitchells says that “neither dogmas of immortality nor
that of death being the final end are likely to create positive
attitudes in the child and adolescent”.
Neither is “I don’t know” very helpful but to say “NO ONE YET
KNOWS” is in keeping with the natural urge of the exploring
child, who from babyhood is bent on finding out what life is
all about.
She suggest saying
“PEOPLE ARE STILL TRYING TO FIND OUT, JUST AS
THEY ARE TRYING TO FIND OUT WHAT IS IN SPACE.
PROBABLY WHEN YOU ARE GROWN UP YOU’LL GO
ON TRYING TO FIND OUT TOO, BUT THE BRAIN IS
LIMITED AND CAN’T FIND OUT EVERYTHING”.
Religion and death
Religion can be a prime source of strength and sustenance
to many families when they are dealing with dying.
But if religion has not played an important role prior to the
terminal illness, a child may be confused or frightened by
the sudden introduction of religious explanations.
“God’s will” or “Baby brother is going to be with God” could
scare the child in believing that God might decide to
come and get him next.
“Mummy is going to be happy in heaven” coupled with
obvious sadness can leave a child not knowing what to
trust – what they see or what they hear.
How do children grieve?
When children allow themselves to feel grief and express it by
crying, they get over their grief faster.
Holding it inside, pretending they are ok means that they
could stay sad for a very long time.
Children learn to grieve by watching adults. It is important for
adults not to try to hide all their feelings in order to protect
children.
It gives children permission to express how they feel.
Adults must also be mindful that children could try to hide their
feelings in order to protect their parents.
It is important that children can understand that it is all right to
cry, to be sad, feel happy, playful and laugh.
Listen to what they say and do not say. You may need to put
into words things they do not know how to express.
Maintaining as normal a routine as possible. Children need
structure to feel secure during stressful times
It is easy for children to be forgotten when the
focus is on the person who is dying
Children need to be involved in appropriate ways
and not be overburdened by caring
responsibilities.
They need increased support from grandparents,
friends, neighbours, teachers and people they
know and trust.
They need to know there is someone to count on
or they may become too independent and
distrustful.
Younger children especially may find it difficult to
see beyond the here and now and what they feel
may go on forever.
Grief is an emotion as natural as joy – it is not an
illness
It is a process, something to be lived through.
Mourning is a process of suffering on the way to a
new life.
Everyone react differently.
Children may experience all the range of emotions
and reactions listed next or just a few in various
degree of intensity or length of time.
Each one would be quite normal though they can
be frightening, overwhelming and difficult to
cope with for concerned family, friends and
professionals.
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Emotions and reactions
Numbness
Denial and disbelief
Emotions
Behavioural problems
Thinking
Activities
Suicidal thought
Sadness
Anger
Guilt
fear
• Relief (after the death has
occurred)
• Dreams and nightmares
• Physical distress
• Confusion
• Loss of interest
• Loss of confidence
• Low self esteem
• Anguish
• Anxiety
• Loneliness
• hopelessness
Helping children to talk
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It is always nearly better to say how sorry we are than to
say nothing or avoid the subject
There is no magic formula to take away the pain of grief
but we can show we care by listening
Children are great observers. They read messages on
our faces and body posture. We express ourselves by
what we do, by what we say and by what we don’t say
If we avoid talking about what is obviously upsetting,
children will hesitate to bring the subject up or ask
questions about it
Avoidance is understood as “if Mummy and Daddy can’t
talk about it, it really must be bad so I better not talk
either”
We must be sensitive as to when children are ready to
communicate
Children are more likely to express themselves in art,
play or actions than words
Not talking about death doesn’t mean they are not
communicating
DO
• Be available to listen
• Learn as much as you can about the illness
• Reassure children that nothing they did or didn’t
do caused the illness
• Explain what to expect if visiting hospitals etc.
• Help them express their feelings:
 Use list of common feelings: being sad, mad,
glad, happy, scared and lonely
 If no words, can use their hand to indicate how
much they feel
 Use face drawings depicting feelings
 Use cards showing all the feelings
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Show warmth and care
Empathy
Be non-judgemental: accept how they are reacting
Respect: let them show and feel any emotion they chose
Genuineness: don’t play a part, be yourself
Listen more than you talk
Clarity: if you don’t understand, ask them to explain
Open questions ‘why’, ‘how’, ‘when’ and ‘what’
encourage children to talk
• Ask them to explain back again what they have been told
so misconceptions can be corrected.
• Silences: can be used to marshal thoughts or think about
something difficult. Give them time
• Listen to what isn’t said: listen to how they speak, look at
their body language
DON’T
• Don’t avoid the child
• Don’t let your sense of helplessness keep you from
reaching out
• Don’t change the subject because you think it is too
painful for children
• Don’t say “I know how you feel”
• Don’t tell them how they should feel or to “pull
themselves together”
• Don’t think you can soothe the pain away with “time
heals”, “try to think about something else”, “when the
person dies, they won’t feel any more pain” etc.
However well meant, such remarks don’t help the intensity
of emotions and can be very hurtful.
They may also prevent the child to opening up in the future.
Children may need professional help
(CAHMS) if they show evidence of:
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Persistent anxiety about their own death
Destructive outbursts
Compulsive care-giving
Euphoria
Unwillingness to speak about their situation
Expression of only negative feelings about their
dying loved one
• Persistent behavioural problems such as
aggression, stealing
• School phobia
• Persistent poor academic performance
Caring for ourselves
What makes this work especially difficult for
us?
• If you know the people involved
• Situation has a parallel in your own life
• Work climate does not allow you to express the
emotional impact
• Situation hits you when you are already tired,
exhausted or experiencing a crisis (work or
personal)
• You are unable to help
What can you do?
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Learn more about stress
Be observant of what is stressful for you
Listen to your body’s signals
Clarify your own and others expectations for you
Ensure variation in work and leisure
Look after your self and your family
Give yourself the same care and consideration that
you give others
Be involved in what you do but do not go under
Regular team meetings
Regular supervision with feedbacks
It is ok to say “NO”. It is the mark of self awareness,
strength, confidence and integrity to recognise when
something is beyond our expertise.
Activities
Pre-bereavement care gives the young carer the
opportunity to think and talk about their feelings and to
share their worries
The art process allows children to express symbolically
thoughts, feelings and perceptions about themselves
and others
They learn to recognise and express their feelings
Coping skills can then be developed
When drawing, encourage ideas and expressions rather
than drawing ability
During difficult emotional time, children often regress and
scribble, erase, cross-out, draw something unrelated or
leave the page blank. This is all right. It is the beginning
of finding a voice for unspeakable thoughts and feelings
Making a Memory Box
• Best for the dying parent to make one with the
child
• The box can be made, decorated together
• It contains things that remind the child of their
time together with the parent and provides an
important link between the child and the
deceased parent
• It can contain gifts, shells, pebbles collected
together. Memories written on cards, letters,
anything that the child can look at to help them
feel connected with that person
Salt sculpture
To help children to develop and represent their memories
in a practical, visual and tactile way
Producing a salt sculpture = therapeutic activity, promote
reflection and the opportunity to talk.
Material:
• baby food jars
• Table salt
• Coloured pencils
• Coloured chalk
• 5 sheets of A4 paper
• sellotape
Method:
Identify 5 memories or characteristics of the person who is
dying, has died or what life was like before the loss
Match the memories with a colour
Divide the salt into 5 on the pieces of paper
Grind the coloured chalk into the salt and put to one side
Pour the coloured salt into the jar whichever way you wish.
For e.g. pour all of one colour in or keep some back to
repeat the colour. Tilt the jar to avoid horizontal lines if
you wish
Special effects can be obtained by poking a cocktail stick
down the side of the glass. This allows the upper salt to
flow into the lower.
Ensure that the salt has settled and is full to the brim (tap
the bottom of the jar gently on the table) before putting
the cap on and taping down.
Loss and bereavement reading list
• Elizabeth Kubler Ross: On Death and Dying
(Tavistock Books)
• Elizabeth Kubler Ross: On Children and Death
(Collier Books)
• Julia Neuberger: Caring for People Dying of
Different Faiths (Austin Cornish)
• Claudia Jewett: Helping Children Cope with
Separation and Loss (Barnados Publications)
• Good Grief (Cruse Publications)
• Death in Different Cultures (Nursing times)
• Sogyal Rinpoche: The Tibetan Book of Living
and Dying (Rider / Random House)
• Alberry, Elliot and Elliot: the Natural Death
Handbook (Virgin Publishing)
• Earl Grollman: Talking About Death. A Dialogue
between Parent and Child (Beacon Press)
• Philippe Aries: Western Attitudes toward Death
from the Middle Ages to the Present (Marion
Boyars)
• John Bowlby: Attachment and Loss (Penguin)
• Stroebe M, Stroebe W, Hanson: Handbook of
bereavement (Cambridge)
Appendix
To help understand how the stages of dying can impact on
the family.
Based on the work of Elizabeth Kubler-Ross: On Death and
Dying.
The Five “Stages of Dying”
1. Denial: “No, not me”. This is a typical reaction when a
patient learns that he or she is terminally ill. Denial is
important and necessary. It helps cushion the impact of
the patient’s awareness that death is inevitable.
2.
Rage and Anger: “why me”. The patient resents the
fact that others will remain healthy and alive while he
or she must die. God is a special target for anger,
since he is regarded as imposing, arbitrarily the death
sentence. To those who are shocked at her claim that
such anger is not only permissible but inevitable.
Doctor Ross replies succinctly, “God can take it”
3. Bargaining: “Yes me, but…” Patients accept the fact of
death but strike bargains for more time. Mostly they
bargain with God – “even among people who never
talked with God before”.
They promise to be good or to do something in
exchange for another week or month or year of life.
4. Depression: “Yes me”. First the person mourns past
losses, things not done, wrongs committed. But then,
he or she enters a state of “preparatory grief”, getting
ready for the arrival of death. The patient grows quiet,
doesn’t want visitors. “when a dying patient doesn’t
want to see you any more, this is a sign he has
finished his unfinished business with you and it is a
blessing”. He can now let go peacefully.
5. Acceptance: “My time is very close now and it’s
all right”. Dr Ross describes this final stage as
“not a happy stage but neither it is unhappy. It
is devoid of feelings but it is not resignation, it
is really a victory”.
These stages provide a really useful guide to
understand the different phases that dying
patients may go through. They are not
absolute; not everyone goes through every
stage in the exact sequence at some
predictable pace. But this paradigm can if used
in a flexible, insight producing way, be a
valuable tool in understanding why a patient
may be behaving as he or she does.
Handouts
• Help The Hospices: Young Carers Guides – information for
young carers who look after someone with a terminal or
life-limiting illness
• Child and Adolescent Psychiatry Faculty: list of books on
Death and Dying to read with children
• Simon Says Child Bereavement Support: Children’s Age
and Understanding of Death
• The Four Tasks of Mourning for Workers on recognising
how workers may be affected by some form of grieving
process
• A Multi-Faith Society – to provide an awareness on different
responses on death and dying