- It was helpful to remember that there
are those who care and want to help. We sometimes felt
alone as we lived in two worlds- the world of the healthy and
the world of the sick. We found it helpful to remind ourselves
that others did care and wanted to help; they just did not know
specifically what our family needed. So, we made a list of our
family’s needs, and when friends and family would call offering
help, we could give them suggestions from that list and then they
would know specifically how to care for our family. If someone
wanted to help he or she could start out by asking one question:
“What would I need if I were in that situation”. The
answer can begin the process of helping.
- It was helpful to remember that your
thought processes are not always clear when you are under stress.
We realized that after hearing the medical diagnosis of Non-Hodgkin’s
Lymphoma, our minds did not function as clearly as they had before.
After hearing the word “cancer” we did not hear any
more of the conversation. Stress, lack of sleep and lack of eating
all affected us. There were times when days would run together
after we spent weeks in a hospital setting. We found it helpful,
to be mindful of this when making decisions.
- It was helpful to remember to use a tape
recorder to help with the thought processes. Not only did
it help in remembering what was said, when our minds were under
a great deal of stress, but it also was used in the review process
so that we could formulate questions regarding what was said and
what was meant. A tape recorder is sometimes available in the
playroom of each hospital unit.
- It was helpful to remember to choose
a spokesperson to speak for the family. Our primary attention
needed to be focused on our family and on our child, so assigning
one person to speak for our family and its needs was so very helpful.
This person could update others, coordinate meals, and help to
organize child care. Also, in regards to time, updating others
became a difficult thing to do because we wanted to call back
many people, but there never seemed to be enough time to do so.
Since we could not make calls during the day we decided to leave
a weekly message on our answering machine, updating all who called.
This way anyone wanting to know specifics and how they could pray
for our family could by calling and listening to the message.
We also left the name and phone number of the spokesperson for
our family’s needs for anyone calling wanting to know how
they could help. Not repeating your circumstance in front of your
loved one and freeing up your time to be there for your family
were so valuable. Also, some Children hospitals have a web-site
where you can update others on your child’s progress. We
just asked our social worker if the hospital had a web site for
this resource.
- It was helpful to remember that we could
never promise anything to our child that we could not deliver.
This became clearly evident when someone wanting to protect our
son said that a procedure would not hurt. After the procedure
was done, our son emphatically stated that it indeed did hurt
and that he could not trust that person to tell him the truth.
We realized how trust could help in the process, and that we needed
to be open with our son, in order to help him. When procedures
like IV’s or spinal taps were going to be performed we would
say that it would hurt but just for a short time; that he should
take a deep breath and focus on his happy place (which for our
son was the swing in our back yard). We found that when our son
had procedures that did not hurt, he would be completely and totally
relaxed, knowing that we would always be honest with him. When
he would ask questions that we did not have the answers too, we
would always try to find the answers for him. Also, we tried to
become better listeners because we wanted to respond to each question
that came from his heart. We gave him the information that he
requested, but we were mindful to give him the answer in a way
that was compatible with his age and his understanding.
- It was helpful to remember to stay organized.
We used a notebook to write down everything. The notebook came
in handy as we wrote down questions that came up during the day.
Then we would have a written list, of things to remember to ask
the doctors the next morning. Also, we used the notebook to write
down the names and phone numbers we needed of doctors and to keep
the business cards of all involved in our son’s case. The
notebook was also used for clinic visits, medications schedules
(and their side affects) and also a reminder of medical procedures.
This notebook was a valuable resource in the process of staying
organized and it was always kept near the phone.
- It was helpful to remember that a schedule
helps the child. Often trying to keep a schedule is a difficult
thing to do in a hospital setting, but doing so is helpful. We
would often let the staff know when our son was tired (note on
the door for naptime). We requested to know the best time to schedule
physical therapy, and when bath and meal times would be. School
issues were difficult, but a teacher on the unit helped greatly
as well as the hospital staff assigned to each unit. The schedule
would be helpful for family and for other visitors, who needed
to know when would be the best time for their visit. Keeping a
schedule means maintaining some type of normalcy for the child.
We were also mindful to open the blinds in the morning to let
our son know that it was time to wake and to close the blinds
at night to let him know it was time to sleep.
- It was helpful to remember to use the
hospital services. We did not know all of the services
that the hospital provided until sometime later in our stay. There
was a social worker assigned to our unit and when we met with
her she informed us of all the services the hospital provided.
For some hospitals, what they provide was different then what
we received, thus some of this information is unique for each
hospital. For us, at a Children’s hospital we learned that
there were rooms set aside to sleep in during the day and rooms
assigned for the evening. Meal tickets and parking vouchers for
parents were available through the social worker on the unit.
We could order a meal (for a fee) with our child’s meal
so we did not have to leave the room as often. We also found one
nurse that our son responded to greatly we requested if she could
be assigned to his room whenever she was on duty. The answer was
positive, and that made our child’s stay more comfortable
since she knew him well. Also, remember to use technology within
the hospital. The fax machine soon became our friend, since our
other two children were living far away. We used the fax, to correct
homework, to see completed work, to sign report cards and to send
messages of love. As a mom, I would often send love and kisses
by way of fax, putting a kiss with lipstick on a sheet of paper
and also tracing our hands to show the touch of love sent from
the hospital to our home. The response from our boys was usually
with anticipation as to see what we had faxed that day.
- It was helpful to remember the bring
items from home, to make your child’s room more personable.
Stuffed toys, posters, artwork, family pictures and games, were
always part of our son’s hospital room. We made our child’s
room (as much as possible) like his room at home. Bringing all
the things that mattered to him to decorate the hospital room
made his surroundings more comforting. We found it helpful to
keep a camera close at hand, and when someone came for a visit
we would take his/her picture and put it on the bulleting board
to remind our son how much he was loved and cared for. We also
kept a sheet near the door for each visitor to sign before leaving
the room; it had our son’s name at the top and under it
we asked visitors to write how our son was special to them. These
encouraging words helped greatly. Also we requested each visitor
to bring their favorite scripture verse when visiting and leave
it up on the wall, so we could recount the visit and what made
that verse special to that person.
- It was helpful to remember to be mindful
to stay well. We realized that if we became sick we could
not take care of our child. Since cancer patients often have low
blood counts, they can easily pick up something that could become
difficult to fight off. We had to remind ourselves to eat (even
if we were not hungry) and to sleep whenever possible to help
our bodies stay well during the hospital stay. Realizing that
we as parents needed to focus on our health was a difficult thing
to do. When your family is facing a life threaten illness; it
is too easy to become totally focused on the one who is sick.
So when others came for a visit, we would us this time to eat
or sleep knowing they had company for a period of time.
- It was helpful to remember that your
child often watches your reactions. Once, while a family
member was crying, our son asked if he was dying. We then realized
how much he gaged his heath according to our reactions. Knowing
that little eyes were watching our every move made us very aware
of our reactions.
- It was helpful to remember that you may
be the parent of more than one child. We had two other
children to care for and to think about. How could we be in two
places at once? Since we knew we could not, we were mindful to
have one parent home when out two other children were home and
to set aside personal time for each child. This sends the message
that they are important and loved too. When you are a single parent,
incorporate the help of others around you who care and want to
help.
- It was helpful to remember that when
one person faces a medical diagnosis, the whole family faces it
too. We would often say that when our son was diagnosed
with cancer the whole family has cancer too. Each family member’s
life was now changed. Now there were new things to do, and new
schedules to keep. Hospital visits would now become routine and
the home environment would change drastically. Mom and dad now
took on new responsibilities and the siblings do too. It was a
difficult time for everyone, and sitting down taking the time
to talk become vitally important. Sitting together to ask and
answer questions is helpful. We were a team, a family and we wanted
to all work together toward the same goal.
- It was helpful to remember to incorporate
the other siblings in the care of the one who is sick.
This was not difficult because the needs of the family are numerous.
Certain things needed to be done everyday, from the simplest (holding
a brothers hand) to the most difficult (waiting for a long hours
in a hospital setting). Incorporating the care of the one who
is sick by other family members makes the family bond grow even
stronger.
- It was helpful to remember to give your
child a job to do. This often seems strange when we tell
others about this request we asked of our son, but it worked so
very well. Our son was totally focused on his treatment at the
beginning of his illness. After several months, he would cry when
entering the hospital because he knew what was ahead of him. Then
a dear friend made a valuable request. She asked him if he would
like a job to do. His job was to be an ambassador for Jesus Christ
to those who were sick and in need of a helping hand. When our
son realized the importance of helping others, he quickly refocused
his thoughts on them. He would often talk with those who were
going through treatment, telling them that they were not alone,
and help them by holding their hand during difficult times. This
changed his whole outlook and thus, he found purpose in being
at the hospital.
- It was helpful to remember that no one
knows your child like you. Being your child’s primary
caregiver, you will know all the specifics of your child’s
life and all the things that make your child unique and special.
The personality of each child is so very different. The hospital
staff knows this too, and will work with you regarding your child’s
needs. This information is useful in a hospital setting, since
there will be opportunities when you will use this information
to help in specific situations with your child. Knowing all the
specifics of what makes your child unique will come in handy during
times of diagnosis, medical procedures, stress, and fears. Others
will look to you to see how to handle certain issues, and you
will most likely know how respond since you are the ones who know
your child best.
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What Parents Can Do to Help Their Child During a Hospital Stay...
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