Taking care of a chronically ill child is one of the most
draining and difficult tasks a parent can face. Beyond facing
your child's physical challenges and medical needs, you will
have to deal with the emotional needs your sick child may
have and the emotional impact that the prolonged illness can
have on the entire family.
Luckily, this tough balancing act doesn't have to be
accomplished alone: support groups, social workers, and
family friends often can lend a helping hand.
Explaining Long-Term Illness To Your Child
Honest communication is crucial to helping a child adjust to a
serious medical condition. It's important for a child to know
that he or she is sick, and will be getting lots of medicine.
The hospital and the medicine may feel frightening to your
child, but they are part of what it takes to helping your child
feel better.
As you are explaining the illness and the treatment to your
child, it's important to clearly and honestly answer your
child's questions, and provide the information that he or she
will need to know in a way he or she will understand and can
respond. The aim is not to frighten your child, but to give
your child the words to communicate information and
concerns to medical professionals and others.
To maintain your child's trust, it's also important to
accurately explain and prepare your child for any treatments
- and possible discomfort that might go with along with those
treatments. Avoid saying 'This won't hurt,' if the procedure
is likely to be painful. Instead, tell your child that a
procedure may cause some discomfort, pain, pressure, or
stinging, but then reassure your child that it will be
temporary and that you'll be there to support him or her
while or after it's done.
Many hospitals offer parents the choice of talking to their
child about a long-term diagnosis alone, addressing the child
with the doctor present, or including the entire medical team
made up of doctors, social workers, and nurses. Your doctor
or other medical professional may also be able to give you
some advice on how to talk to your child about his or her
illness.
Tackling Tough Emotions
Your child is going to have many feelings about the changes
affecting his or her body, and should be encouraged and given
opportunities to express any feelings, concerns, and fears.
It's a good idea to ask your child what he or she is
experiencing and listen to everything he or she has to say
before bringing up your own feelings and explanations.
This kind of communication doesn't always have to be verbal.
Music, drawing, or writing can often help a child living with a
life-threatening disease to express his or her emotions and
to escape through a fantasy world of his or her own design.
Your child may also need reminders that he or she is not
responsible for the illness. It's common for kids to fear that
they brought their sickness on by something they thought,
said or did. It is important to reassure your child that this is
not the case, and to explain, in terms that he or she can
understand, what caused the illness. (You may also want to
reassure your child's siblings that nothing they said or did
caused your child's illness.)
For many questions your child asks, there just aren't going to
be easy answers. And you can't always promise that
everything is going to be fine. But you can help your child
feel better by listening to his or her feelings, making him or
her understand that it's okay and it's completely
understandable to have those feelings, and assuring your
child that you and your family are going to be there to make
him or her feel as comfortable as possible.
If a child asks "why me?" it's okay to be honest, even if the
answer is "I don't know." It's a good idea to follow this up by
explaining that even though it's unknown why the illness
occurred, the doctors do have treatment for it. (If that is
the case.)
Your child may say "it's not fair that I'm sick." Acknowledge
that your child is right, that it's not fair. It's important for
your child to feel like it's okay to feel angry about the illness.
Your child may ask: "am I going to die?" How you answer is
going to depend on your child's age and maturity level. It's
important to discern, if possible, what specific fears or
concerns your child may be having, and to address those
concerns specifically. For example, your child may be actually
worried about being in pain.
If it is reassuring to your child, you may refer to your
religious, spiritual, and cultural beliefs about death. You may
want to stay away from euphemisms for death such as "going
to sleep." Saying that may cause your child and siblings to
fear going to sleep. Regardless of your child's age, it's
important that he or she know that there are going to be
people who love him or her and who will be there for as long
as they are needed, and that your child will be kept
comfortable.
Just like any adult, your child is going to need some time to
adjust to the diagnosis and the physical changes he or she
may be experiencing, and it's likely that your child is going to
feel sad, depressed, angry, afraid, or even denial. It's a good
idea to think about getting some professional counseling help
if you see signs that these feelings are starting to intefere
with your child's ability to function, and your child begins to
seem withdrawn, depressed, and show radical changes in
eating and sleeping habits that aren't related to your child's
physical illness.
Childhood Behavior
Although kids with chronic illnesses certainly require extra
"TLC," special medical requirements don't eliminate the
routine needs of childhood. The foremost - and perhaps
trickiest - task for worried parents is to treat a sick child
as normally as possible. Despite the circumstances, this
means setting limits on unacceptable behavior, sticking to a
regular routine, and avoiding overindulgence. This may seem
impossible, particularly if you are experiencing feelings of
guilt or an intense need to protect your sick child. But,
spoiling or coddling a child can only make it harder for him or
her to readjust once he or she is ready to return to daily
activities.
When your child leaves the hospital for home, normalcy
remains the goal. Your child may want to visit or stay in touch
with friends through visits, if possible, or through email, the
phone or letters.
Dealing with Siblings
Family dynamics can be severely tested when a child is sick.
Clinic visits, surgical procedures, and frequent checkups can
throw big kinks into everyone's schedule, and take an
emotional toll on the entire family. To ease these pressures,
reach out for any help you can get to help keep the family
routine as close to normal as possible. Friends and family
members may be able to help handle errands, carpools, and
meals. Siblings should continue to attend school and their
usual recreational activities; the family should attempt to
provide some predictability and time for everyone to be
together.
Flexibility is key. The old 'normal' may have been the entire
family around the table for a homecooked meal at 6, while
the new 'normal' may be take-out pizza on clinic nights.
Also, you may want to talk with your other kids' teachers or
school counselors and let them know that a sibling in the
family is ill. Those school personnel may be able to keep a
look out for any behavioral changes or signs of stress among
your children.
It is common for siblings of a chronically ill child to become
angry, sullen, resentful, fearful, or withdrawn. They may pick
fights or fall behind in schoolwork. In all cases, parents
should pay close attention, so that the siblings don't feel
shunted aside by the demands of the sick child.
It may also help your sick child's siblings to be included in
the treatment process whenever possible. Depending on
their ages and maturity level, visiting the hospital, meeting
the nursing and physician staffs, or accompanying their sick
sibling to the clinic for treatments can also help make the
situation less frightening and more understandable.
What they imagine about the illness and hospital visits are
often a lot worse than the reality. When they come to the
hospital, hopefully they'll develop a more realistic picture
and see that, while unpleasant things may be part of the
treatment, there are also people who care about their sibling
and try to minimize discomfort.
Lightening Your Load
Although no magic potion exists to reduce the stress involved
in caring for a child with a long-term illness, there are ways
to ease the strain.
Break problems into manageable parts. If your child's
treatment is expected to be given over an extended time,
view it in more manageable time blocks. Planning a week or a
month at a time may be less overwhelming.
Attend to your own needs. Get appropriate rest and food. To
the extent possible, pay attention to your relationship with
your spouse, hobbies, and friendships.
Depend on friends. Let them carpool siblings to soccer or
theater practice. Permit others - relatives, friends - to
share responsibilities of caring for your child. Remember
that you can't do it all.
Ask for help in managing the financial implications of your
child's illness.
Recognize that everyone handles stress differently. If you
and your spouse have distinct worrying styles, talk about
them and try to accommodate them. Don't pretend that they
don't exist.
Develop collaborative working relationships with health care
professionals. Realize you are all part of the team. Ask
questions and learn all you can about your child's illness.
Consult other parents in support groups at your care center
or hospital. They can offer information and understanding.
Explore support groups for parents who have children with
the same or similar illness.
Keep a journal.
Utilize support staff offered at the treating hospital.