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INTERACTIVE TIPS FOR FAMILIES WHO HAVE CRITICALLY OR TERMINALLY ILL CHILDREN
Ellen Kaplan-Crawford
05/11/05
THE MANY FACES OF GRIEF
Grief is a normal and natural process that takes place when a child has
been diagnosed with a life limiting illness. Grief may be expressed by
tears, anger and overt sadness or by withdrawal, depression and extreme
fatigue. You can reassure your friend or family member that its okay to
show their grief, whichever way they choose. There is no right or wrong
way.....Numbness may protect them from the full pain. The more
devastating realization of the situation may come much later. This may
come at a time when you as a friend or family member may have adjusted
to the shock and may be expecting the parents to be adjusted
themselves. Understand there are no time limits to grief- the parents
may need support from you more than ever as time passes. Parents who
find themselves in this situation may view life as unfair. As a friend
or family member, we hardly know what to say or do. Feelings of
inadequacy, powerlessness, helplessness and discomfort are common and
often cause us to make conversation which is not always comforting or
may cause us to avoid the parents and ill child all together. We need
to understand that there is no ‘right’ response and that you cannot
take away the pain. The parents may need to talk about their situation
or express their despair or loneliness to help ease their pain and
provide an emotional release. Do not let your friends and family grieve
alone- there is a tremendous sense of isolation and abandonment during
the grief process. You can help by caring and by being there. The
knowledge that someone cares enough to listen can be critical.
Listening and being there may give greater comfort than anything you
could say.
MANIFESTATION OF GRIEF
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A. FEELINGS
1. Sadness/Loneliness- may be accompanied by crying
2. Anger- frustration over not being able to prevent it/ sense of abandonment
3. Guilt- something that happened / neglected
4. Anxiety- feelings: unable to live w/o your child/ your own mortality
5. Isolation- from other family
6. Fatigue/ Listlessness/ apathy- psychological origin manifests physically
7. Shock- protects against overwhelming feelings of grief and loss
B. PHYSICAL SENSATIONS
1. Hollowness in stomach
2. Weakness in muscles
3. Tightness in throat/chest
4. Lack of energy
5. Oversensitivity to noise
6. Dry mouth
C. THOUGHTS
1. Disbelief- unreal- unimaginable-question your future/survival
2. Confusion- difficulty concentrating and organizing thoughts
3. Preoccupation- obsessive thoughts.
D. BEHAVIORS
1. Sleep disturbance
2. Appetite disturbance - weight changes
3. Absent minded behavior- distracted- feel like you are going crazy
4. Social withdrawal and isolation- feel different from others
DIFFERENCES BETWEEN MOTHERS AND FATHERS
Mothers exhibit more symptoms of grief and depression
Fathers APPEAR to be dealing with the daily routines of life
Often husband and wives may resent each other because of their
differences in grieving- husbands may resent their wives helplessness
while the wives may resent their husbands’ apparent coping.
Once the Wife has coped with her grief, the Husband may begin to
feel the full force of his and may display grieving behaviors which had
been suppressed.
Each parent find themselves on their own- failed expectations- cannot rely on that person to help you in your time of grief
SIBLINGS
Siblings experience the personal loss of a companion
there may be a rapid shift in expectations for the sibling from
their familiar roles to new and unfamiliar positions within the family
new and untested behaviors and attitudes and competencies will be required
as a response, siblings may express their feelings not in words but in behaviors- particularly anger
siblings may suppress feelings of sadness or loneliness because they fear it is too difficult or painful for the parents
THINGS FRIENDS CAN DO TO HELP
LISTEN- the best support you can give- let them express their
emotions- Listen openly, actively and responsively- paraphrase what
you’ve been hearing, ‘so, you are saying that...’ or ‘ what I’ve heard
you say’- reflect feelings back to the family members by saying, ‘you
sound scared, sad, etc.’ or ‘sounds like that was a really scary or sad
experience for you’.
BE HONEST- You won’t know all the answers- you may not even know
what to say to the family- it’s okay to say ‘I don’t know” and if you
say the wrong thing, admit it and start over
BE NON-JUDGMENTAL- each person manages tragedy and expressions of
grief in their own unique way- accept them whether or not you
understand- each culture has its own practices and traditions- be
sensitive to them- always ask about their feelings instead of assuming
you know how they feel- create a safe place for the family where it is
okay to cry or to be mad- let them know its okay to feel-Encourage them
to be patient with themselves; not to expect too much of themselves too
soon
ALLOW PARENTS TO PARENT- give parents the time with their child
and the chance to hold them and care for them. Follow the family
members’ cues- proceed based upon the person’s response- pay special
attention to non-verbal communication- Respect the dynamics of each
person’s anticipatory grief. The often visible expressions of pain and
confusion shown by grieving parents are normal- grief is an ongoing and
demanding process. Allow the parents to express as much grief as they
are able to share with you.
ALLOW FOR SILENCE- Be comfortable with and allow silence- you are
not there to make conversation- you are there to provide what the
family members need, i.e., something to drink, a listening ear, a
shoulder to cry on- also, simply being there with the family members in
their difficult time can be extremely helpful- Be satisfied to simply
‘be there’ for the family. Avoid meaningless small talk
ENCOURAGE SHARING and CARING- Look at pictures of the child if
they are offered-Encourage memory sharing- likes, dislikes, child’s
personality, favorite stories, memories- Let your genuine concern and
caring show. Extend personal and sensitive gestures of concern such as
bringing flowers or writing a personal note expressing your feelings;
Other ways to show you care include a hug or a touch on the arm- Make
practical and specific suggestions such as offering to stop by at a
convenient time, bringing a meal, purchasing a comforting book,
offering to take the other children for a special outing, treating the
mother and father to something special, run errands, encourage
journaling, be available
IN THE WORKPLACE-Co-workers can help by temporarily sharing the
workload, especially when the parent has difficulty concentrating or
can donate their leave time to help the parent; Employers can temper
the workload, ensure success and lessen cause for frustration or
failure- this will help build self esteem; encourage the employee to
take extra days off from work- having an ill child can often mean
sleepless nights...the parents may need more rest than normal just to
keep going; Keep in mind that although the parent is undergoing a
difficult time in their lives, they can still be valuable members in
the workplace...encourage their involvement and contribution...this may
be the only part of their lives that they see as being intact ..
therefore its vital that they feel they can still function and
contribute.
THINGS FRIENDS CAN SAY TO THE PARENTS
I’m sorry this happened to your child; I’m sorry to hear about your child’s illness
Your reactions are normal
Your reactions or feelings are okay
It is understandable that you feel this way [do not say: ‘I
understand how you feel or what you are going through’...while you can
understand how people might feel, you are not the one experiencing the
emotion and it is impossible for you to fully understand another’s
subjective feelings- telling someone you ‘understand’ can ring hollow
and can cause a shut off in communication]
It is okay to talk to me about it; I am here for that purpose
You are not going crazy
It is not your fault; you are doing the best you can
Would you like to tell me about your child/illness
I am sorry about the pain you must be feeling 1
If you don’t know what to say, just say so
I know this is hard for you...I’m thinking about you
Is there anything I can do to help you
THINGS FRIENDS SHOULD NOT DO
Do not tell the family how or what they ‘should’ be doing, feeling, believing or thinking
Do not set limits for them about what is right or appropriate behavior
Do not take control from the family by trying to make decisions for them
Do not deny, discourage, or ignore expressions of grief, anger or other feelings
Do not control the family’s time- be responsive to cues that they may not want to talk/spend time with you
Do not encourage the family to take on your personal values, attitudes, beliefs or feelings
Do not impose your views or feelings on the parents-allow them to talk
Do not make small talk to avoid silence
Do not take on more than you feel comfortable with
Do not focus on your own past experiences with loss or grief
Do not avoid laughter- there is enjoyment in the memories the
family shares and it can be very healing to enjoy the laugh together
Do not avoid the parents even if you are uncomfortable and unable
to cope with your own feelings; You may feel awkward or unable to cope
but if you avoid the parents, you may add pain to an already painful
experience. Avoidance may be due to your own grief or fears of loss or
losing your own children.
Do not let your own sense of helplessness and inadequacy keep or prevent you from reaching out to the family
Do not be afraid to let the parents cry or to cry with them
Do not wait for the parents to ask for help or tell you what they need
Do not change the subject when they talk about their child- let them decide when to change the subject
Do not look for some moral lesson or something positive about their situation
Do not expect that sharing happy things in your life will alleviate/ ease the pain or crisis the family is experiencing
THINGS FRIENDS SHOULD NOT SAY TO THE PARENTS
G-d doesn’t give you anything you cannot handle
It could be worse
You can always have another baby/child (this implies that the
child is replaceable or having more than one child reduces your grief)
At least you have other children or you should be grateful for your other children
You have other children who need you or you have other children to live for
It is G-d’s will (even if you believe it, don’t say it)
It is best if you just keep busy
I know just how you feel
I understand how you feel
You need to get on with your life
You’ll get over it
You should be coping better by now
Time heals all things
G-d wanted your child in heaven more than you wanted your child here (This can make the griever angry at G-d)
Just think happy thoughts, “don’t cry’
He/she is much happier in Heaven than he/she was here on earth
THERE ARE BOUNDARIES
While it is important to connect with people you are trying to help, do
not take their problems on as your own. Instead, try to help the family
members find their own solutions or resolutions. When faced with the
intense feelings, emotions and experiences of a grieving family, it can
be tempting to rush in and ‘save them’ by helping in every possible
way. This is not in the best interest of the family nor yourself. Do
provide an empathetic listening ear. Understand that people feel,
noticing what those feelings are, expressing what you perceive and
communicating that these feelings are okay and are caringly understood
by you. This is not the same as ‘knowing’ how someone is feeling and
telling them so
TIPS FOR THE FAMILY
DO NOT TRY TO DO EVERYTHING YOURSELF. ASK FOR HELP Family,
friends and clergy and people who belong to community organizations can
help you. Some can help with planning- others can help with carrying
out those plans and giving support. People who live in the same
household or who will be involved in carrying out the plan should be
involved in developing the plan- that way, they will be more committed
to carrying it out. Others may want to help but need to be told how- be
clear with these people about what you would like them to do as well as
the limits of what is expected of them. When people ask you how you are
doing, don’t lie by saying “I’m fine”- Instead, respond by stating,
“I’m having a few good minutes/hours/days” or “ I’m having as many good
days as bad days” or “I’m having a few bad days/hours”- this way, those
who care have an opportunity to respond in a way that is helpful and
provides you with an honest reflection of how you feel.
TAKING CARE OF YOUR OWN NEEDS AND FEELINGS You
need to be at your best if you are going to provide the best care for
your child. Therefore, pay attention to your own needs. Set limits on
what you can reasonably expect yourself to do. Take time off to care
for yourself and ask for help before stress builds. It is natural to
have strong feeling when you are helping someone with a serious
illness. Some common feelings caregivers have as well as strategies for
dealing with them are:
FEELING OVERWHELMED - especially if the disease
is not responding to treatment or is progressing. Try not to make
important decisions while you are upset- sometimes you must make
decisions immediately but often you do not. Ask the doctor or nurse how
long before a decision needs to be made- take time to sort things out.
Talk over important problems with others who are feeling more
levelheaded or rational- if you are feeling very upset or discouraged,
ask a friend, neighbor, family member to help. They can bring a calmer
perspective to the situation as well as new ideas and they can help you
in dealing with the problems you face.
ANGER
there are plenty of reasons for you to become angry when caring for a
child with a serious/ life threatening illness- For example, the person
may be demanding or irritating at times; friends or family may not be
as helpful or understanding as you would like; perhaps you feel your
religion has let you down- It is natural to be angry when your life has
turned upside down and inside out. These feelings are normal. What is
important is what you do with them. The best way to deal with angry
feelings is to recognize them, accept them and find some way to express
them appropriately (perhaps to journal your feelings by writing them
down) If you do not deal with your anger, it can get in the way of
almost everything you do. Here are some ways to deal with your anger:
Try to see the situation from the other persons point of view- other
people are under stress too and that some people deal with stressful
situations better than others. Express your anger in an appropriate way
before it becomes too severe- otherwise it will impair your judgment
and you are likely to make other people angry in return. Get away from
the situation for a while- try to cool off. Find safe ways to express
your anger- beating on a pillow, yelling out loud in a car or closed
room, doing some hard and vigorous exercise- sometimes it helps to vent
anger with someone who is safe, someone who will not be offended or
strike back- a friend, clergy, etc. Talk to someone about why you are
angry- often helps to understand why you reacted that way allowing you
to see your reactions in perspective.
FEAR You
may become afraid when someone you love has a serious illness. You do
not know what is in store for this person or for yourself. You may fear
that you may not be able to handle what happens. Here are some ways to
deal with that fear: Learn as much as possible about what is happening
and what may happen in the future- knowledge can help reduce fear of
the unknown- it can help you be realistic so that you can prepare for
the future. Talk with health care professionals and other people who
have experienced the same or similar illness. Talk with someone about
your fears- it often helps to explain to an understanding person why
you feel afraid. This allows you to think through the reasons for your
feelings and show you that other people realize and appreciate how you
feel or that other persons in your similar situation feel the same way.
LOSS AND SORROW A serious and life threatening
illness can bring great sense of loss and sorrow- You may feel sad that
plans in your life or that you had for the future might not be
fulfilled. You may feel the loss of the ‘normal’ person and the
‘normal’ things you do together before the illness- memories of how
he/she used to be may make you sad- and you may feel burdened by more
responsibilities that you must handle alone. Hear are some ways to deal
with the loss or sorrow: Talk about your feelings of loss with other
people who have had similar experiences- people who have been
caregivers for other children with serious/life threatening illnesses
usually will understand how you feel. Support groups, your doctor’s
office, social workers in hospital settings and organizations are some
ways you can try to find people in similar situations- Read books on
the subject- there are many books which deal with anticipatory grief
issues- having increased knowledge and understanding of what you may be
going through may help you to cope.
GUILT Many
parents who have a child with a serious/ life threatening illness feel
guilt at some time during the illness- They may believe they did
something to cause the illness or that they should have recognized the
disease sooner. They may feel guilt about not doing a better job of
caring for their child or because they are angry or upset at their
child. They may feel guilt because they are well and their child is
sick. Some parents feel guilt almost out of habit, having learned from
childhood to feel that way whenever something goes wrong. You may feel
guilt over a secret desire that it be all over. Although feelings of
guilt are understandable, they can interfere with the best possible job
of caregiving. Guilt makes you think and focus only about what you
think you did wrong. Most problems have many causes- you must look at
all of the causes and then develop a plan to deal with the entire
situation. For example, if you are upset toward the child you are
caring for, you need to talk openly with your child about what both of
you did- not just feel guilt about what you did or feeling angry. Your
goal here is to work toward forgiveness...both for yourself and your
child. Dwelling on feelings of guilt about the past will rob you of the
precious energy you need to cope with the present. Here are some ways
to deal with feelings of guilt: Do not expect yourself to be perfect-
remember that you are human and will make mistakes from time to time-
Do not dwell on mistakes- accept your mistakes and get beyond them as
best you can. Repetitive negative thoughts such as guilt can be
controlled by pushing them aside with positive, constructive thoughts.
POSSIBLE OBSTACLES think about what can prevent you
from carrying out your plan for being an effective care giver, for
example: • My child doesn’t want to talk about feelings He/she is the
best judge of that- your job is to make sure the opportunities to
listen are there when and if he/she decides to talk about their
feelings • What if my child talks about things I do not want to hear
Even if what you are hearing hurts you, consider in the larger picture
what it means to your child to be able to express it. Remember that you
may not have all the answers and that you do not have to resolve
everything- you are helping even if you are only listening • My child
will not follow my advice If you feel frustrated, try to understand how
important it is for your child to retain some control over their life.
You may know what is best for your child, but realize that your job is
to support, not to always make decisions for them. Be prepared to
practice letting go, especially if you have a dominant personality or
have usually been the one to make the family decisions. • I don’t have
time to take care of my own needs This is the most common reason why
care givers become exhausted. They become preoccupied with problems and
do not pay attention to themselves You will be a better care giver in
the long run if you take the time to get help so that you can do things
that you enjoy and relax you(especially when the stress is high) • If I
don’t do it, it wont get done Yes, it will. No one is indispensable.
Sort out the things that need to be done verses those you would like to
see done. It is perfectly acceptable to let some things, like
housework, slide a bit when you take on new responsibilities. • I hate
asking other people to help me There are two ways around this problem-
First, get together socially with people who could help and let them
volunteer. Second, you could have someone else ask for help for you.
Try to make the times when others visit to be both pleasant and
rewarding, then they will want to visit and help. • My child doesn’t
want anyone else to help Suggest trying to get help even for a short
time- after which you can talk over how it worked. Also, explain to
your child that you need the help, not him/her.
Bibliography:
Bereaved Families Online. A Child or Parent has Died..How Can a Friend Help. www.bereavedfamilies.net
Remer, M. (2004) Talking to Someone Whose Child is Dying. Vertfield Farms
Bluebond-Langner, M (1978) The Private Worlds of Dying Children. Princeton, New Jersey.
www.Rescue-Workers.com/8.html: Davis, Understanding Grief: 1/16/2005. | |
