BY ROBERTA CARSON
BEING A caregiver is
hard work. I know. I
cared for my teenage
son, Zach, for more
than two years as he
battled a terminal brain
tumor. Beyond my role
as a grieving parent, my
experience taught me that managing a
serious illness or injury is incredibly challenging work for which no one is ever fully
prepared. The more I learned, the more I
realized the struggle is far greater than I
I also learned that being engaged in the
process results in better care. My experience and new understandings compelled
me to help others manage illness or injury.
It’s not always easy and it’s not without
work, but taking the steps necessary to
become an involved, organized member of
the medical team will help you manage
your role and may even lead to better care
for your loved one.
Here are ;ve tips and considerations
to be more e;ective and make your role a
Knowledge is power
Realize there are many opportunities
for mistakes along the way: by you, your
doctor, the pharmacy, the hospital, the lab,
etc. We’re all human, after all. Being aware
that you may not understand as well as you
think you do, or that doctors make mis-
takes, can help you be the best caregiver
you can be. Remember that knowledge is
power. Avoid the temptation to bury your
head in the sand. It can be a strong urge!
It’s vital that you are fully engaged in
the process. Don’t just sit back and assume
someone else will manage things for you.
You must be the captain of the ship. E;ective communication between the patient
and physician leads to better outcomes.
Patients who are less involved in their
care are more likely to experience a medical error in diagnosis or treatment and to
have poor care coordination among their
doctors. My recommendations for improving engagement include:
• Develop relationships with the medical team. Remain informed and involved.
•Be the squeaky wheel. Be politely
assertive. Advocate. Ask questions.
• Repeat questions until you understand the answers.
• Ask questions along the way, not just
at initial diagnosis.
•Realize you might have to tell the
patient’s story to di;erent doctors at different times. Don’t shorten the story or
skip details because you are frustrated by
having to repeat yourself.
• Get a second, or third, opinion (
preferably from a doctor at a di;erent hospital). Your doctor won’t be insulted. Bring
copies of your medical records.
• If something feels “not right,” don’t
hesitate to speak up.
• Follow up on test results if you haven’t
heard back within the expected time
frame. Never assume no news is good news.
• Know when to call the doctor or visit
the emergency room as symptoms develop
Be prepared and stay organized
Doctors are often rushed seeing
patients in time-limited slots. Being organized and prepared is vital to an e;cient
visit. Here are a few tips.
• Write down the patient’s “story” and
questions and concerns in advance.
• Address your most important issues
at the beginning of each appointment.
• Always bring the patient’s medical
records with you. Don’t assume each doctor has received notes and test results from
the other doctors.
Five ways to be a better caregiver
FOR YOUR HEALTH
To help you cope with
your role as a caregiver,
stay connected to family
and friends and don’t
hesitate to ask for
and accept help.