This is the most difficult
topic I have researched, but
it needs to be discussed in
order to help children and
parents come together as a
family in dealing with the
potential death of a child.
The idea of children dealing
with a terminal illness or
disease is difficult for all
of us to talk about. A child
should never have to deal
with any situation alone,
especially their own death.
If you are a child with a
terminal illness no one can
really understand what you
are going through. People,
even your parents, may say
"I understand", but that is
not a comfort to you because
you know there is no way
anyone can understand your
emotions during this time.
It is important for you to
talk with your parents about
ALL of your thoughts
and emotions. They are hurting
for you and need to help you
deal with this terrible
situation.
For you parents who are
trying to deal with the
thoughts and emotions of
your child dying, let your
child know they are not alone.
Listen to their thoughts,
give them lots of hugs, make
their time with you full of
happy experiences, and finally,
show them you love them and do
all you can to fill your life
with good memories with them you
can enjoy for many years after
they are gone.
Finally, for those of you who
have a brother or sister
with a terminal illness, let
them know you love them and
are there for them. They
are scared and feel all alone.
They need you for strength
and comfort. They will come
to before they go to their
parents. I urge you to stay
strong and build up your
sibling, because after they
are gone you will be able
to draw your strength from
what you had done for them.
I have tried to put together
a list of websites and
resources for both children
and parents to help all of
you to understand and cope
during this traumatic time.
*NOTE: This website and the
resourses we list here are
not meant to be used by
themselves. We always
recommend seeking professional
assistance in all situations
that call for it. The
information here is only
to help educate you, as
best we can, to find what
ever help and encourgement
you need. I apologize for
the limited amount of
websites and resources on
this subject. There doesn't
appear to be much out
there to help and give
comfort to children who are
suffering through a terminal
illness. As I find more
information I will put it
on here.
Terminal
and Life-Threatening Illness
Many people learn that they
are suffering from a terminal
or life-threatening illness
from a doctor, at a stage
when they may still feel only
a little unwell and the idea
that they may be going to
die is completely unexpected.
Most of us remain completely
unprepared for our own deaths
and the shock of having to
confront it, particularly if
you are younger, maybe with
a dependent family, leads to
a turmoil of emotions and
feelings.
Everyone has to find their
own way of coping and whilst
everyone handles things in
different ways, the reactions
and range of emotions and
feelings of most people can
follow a fairly typical path.
By understanding and
acknowledging these wide
ranging emotions, it can help
the sufferer, their carers
and friends and family to
cope with the situation. It
also gives an opportunity,
however painful to plan,
prepare and say goodbye.
1. Shock
and Disbelief
Like a bereavement, the first
reaction is usually one of
disbelief - the feeling that
it is all some terrible dream.
This is a very normal response
for both the person who is
ill and those closest to them
and may last for several
days or even longer.
2. Denial
The shock of the initial
diagnosis usually gives way
to denial for both the person
who is ill and those closest
to them. They may try and get
on with their lives and
convince themselves that
nothing is wrong. This period
also helps to give time to
come to terms with what is
happening and cope with the
range of emotions they will
be feeling. Again, this
phase may last days, week
or months and occasionally
people may refuse to accept
the situation to the very
end.
3. Anger
and Grief
Acceptance of the diagnosis
and the situation may
introduce feelings of anger,
sometimes directed at the
doctor giving the bad news
or the people providing daily
care. There may also be a
sense of grief for what is
being lost - the healthy,
happy years that are past
and the lost years of the
future, particularly when
people are younger and may
have young children The carer
may also experience these
emotions, sometimes tinged
with guilt and even relief
that they are not the one
with the illness..
4. Fear
Most people have a natural
fear of death, as well as
fear of the pain and
symptoms of the illness
they have been diagnosed
with. In addition, there
will be fears about what
will happen to partners
and family after their death,
particularly if dependent
children are involved.
People with a terminal
illness, as well as often
their carers, need someone
to talk to about their
feelings and fears. Towards
the end of the illness,
some people are able to
come to terms with their
own death and may be able
to make positive plans,
such as what type of funeral
they would like. Others
never reach this sort of
acceptance.
Helping
People with Terminal
Illness
The diagnosis of a terminal
illness creates great
feelings of powerlessness
and lack of control.
There are a number of
positive ways that can be
taken to help and support
the terminally ill person
and their carer, which
will help increase the
feeling of taking control.
The following ideas have
been adapted from books by
Dr Robert Buckman 'I Don't
Know What to Say' and
'Caring For Someone Who
Is Dying' by Penny Mares.
* Accept your relatives
feelings and be prepared
for them to want to cover
the same ground again and
again. There may also be
sharp swings in mood and
outlook which is a
reflection of part of
the process of coming
to terms with what is
happening.
* Acknowledge and recognise
your own feelings. Try
and sort out the feelings
that are helpful from the
ones that are not so helpful.
* Encourage your relative/
friend to talk about their
feelings and try to be
open and honest about your
own. You may find it hard
to know what to say - most
people do - but just showing
that you want to listen and
understand is a way of giving
support.
* If you find it very difficult
to talk openly to each other,
encourage your relative to
find someone she can open up
to - perhaps another member
of the family, a friend, or
a doctor or nurse.
* Encourage your relative to
draw on the strength of her
own past experience, to think
back to difficult and
threatening situations that
they have coped with and
to use this strength to
face the illness.
* Work out the most
practical way in which
you can help. Avoid the
temptation to rush in and
take over with help that
you can't keep up in the
long term.
* Let your relative make
the decisions, don't make
them for him or her.
Find out what they want
to do and let them take
the lead in deciding what
support they want.
* Being there may be more
important than doing
things. Rushing around
may help you to feel better
but your relative might
rather have your company
for a couple of hours.
* Get more information.
People who are under a
great deal of stress find
it very difficult to take
in information. You can
help your relative
understand their illness,
ask questions when they
want to know more and make
informed decisions about
treatment or care.
* Try to help the carer,
by making sure they don't
become isolated and that
they have access to and
accept the help that is
available.
Some
Thoughts For Positive
Action From People Facing
Terminal Illness
1. Establish some goals
to help yourself achieve
something each week
2. Plan some things to
look forward to in the
longer as well as shorter
term
3. If you haven't done
so already, make a will
and arrange your financial
affairs
4. Discuss any worries you
may have about pain and
symptom control with your
medical carers at an
early stage.
The
Carer
Terminal and life-
threatening illness
means that the carer may
have to take on many of
the roles and
responsibilities that the
ill person an no longer
manage alone, such as cooking
or caring for children.
Both parties may find this
frustrating and upsetting,
as well as the increasing
dependence of the ill person.
The main carer may also
have less time to spend
with other members of the
family, and other family
members may have to take
on additional responsibilities
such as chores and helping
in the home.
Coping with conditions such
as incontinence can also
be difficult for both the
carer and ill person and
the illness may also cause
loss of physical or mental
faculties and alter
behaviour or personality.
Carers may begin to feel
worn down by the daily
demands and feelings of
frustration and resentment
are very common. The
extra responsibilities
placed on the whole
family can put a huge
strain on the whole
family.
As the illness progresses,
the ill person is likely
to become more dependent
on other people for the
help and care that they
need.
* Look after yourself
and your own health.
Try to get enough sleep
and rest and talk to your
GP or nurse about getting
enough support and breaks
from caring.
* Try to make some regular
time for yourselves as a
family, away from the
person you care for. Try
to talk openly about the
situation and everyone's
feelings.
* Be flexible and be
prepared to change your
plans. It may be necessary
to get more help with
the caring than you had
originally planned and
this should not be seen
as a failure.
* Think ahead and plan
for the time when you may
not be able to care for
your relative at home.
If you
are a teen with a terminal
illness and need answers or
just another teen to
listen to you, check out
this website. They may be
able to help you find what
you need. Maybe you just
need answers from another
teen to your questions
about anything?
Go to the following
website:
OnYourMind.
net: Peer support, chat,
information and help...
So, what's on your mind?
We're a non-profit web-based
organization from teens,
for teens that can provide
support and referrals
through an online chat,
...
http://www.onyourmind.
net/
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