Author: Laurie Wertich
When Chrissy Johnson’s husband, DeArthur, was diagnosed
with stage IV colorectal cancer, she was immediately thrust
into the new and unexpected role of caregiver. “Before that
I was just his wife,” Chrissy explains. “How do you switch
from being a wife to being a caregiver? The title has been
given to you without your even requesting it.”
Indeed, Chrissy has joined the ranks of
millions of Americans who assume a
role they never requested or prepared
for. Approximately 65 million (29 percent)
American adults have served as unpaid
family caregivers (for the ill, elderly, or disabled)
in the past 12 months.1 It’s a full-time
job with no application process, no training,
and plenty of responsibility. Yet it’s a critical
and potentially transformative job—the ultimate
act of love and service.
Former First Lady Rosalynn Carter—the inspiration
for the Rosalynn Carter Institute for
Caregiving—once said, “There are four kinds
of people in this world: those who have been
caregivers, those who currently are caregivers,
those who will be caregivers, and those who
will need caregivers.” In other words, we are all
in this together.
Chrissy knows this firsthand. “When my
husband and I met, we said, ‘We’re not going to
let any person separate us,’” she recalls. “Now
we add, ‘nor disease.’”
This determination fuels Chrissy’s energy
to serve tirelessly as DeArthur’s caregiver. “I
know this is a temporary role,” she says. “Part
of my job as a caregiver is to see my husband
What is a caregiver?
By definition a caregiver is anyone helping a loved one
navigate a significant illness, such as cancer—but the term
doesn’t even come close to describing the endless list of roles
associated with caregiving. Caregivers are charged with a
multitude of tasks. At any given time, a caregiver may do one
or all of the following:
- Patient support. Provide physical, emotional, and
spiritual care for the patient.
- Medical support. Manage the disease and navigate
the medical system, which may include serving as an
advocate for the patient, attending medical appointments,
and overseeing paperwork.
- Life support. Uphold the ongoing responsibilities
associated with daily life, such as grocery shopping,
meals, laundry, bill paying, household maintenance,
- Financial support. Manage the finances, which may
include working full-time to maintain income and
- Self-support. Maintain a self-care routine to manage
stress and prevent burnout.
“Caregivers do everything,” explains Michelle Moore,
RN, BSN, a care manager at Cancer Treatment Centers of
America® (CTCA) in Zion, Illinois. “Their role is endless.
They are the note-keepers, the breadwinners, the childcare
providers, and so much more.”
The role is all-inclusive and all-important. In fact,
Moore insists that caregivers are an integral component
of the team. “It’s a whole,” she says. “Caregiver and patient
are one and the same. Both people are going through this.”
While the patient endures the challenges of treatment,
the caregiver endures the challenges of juggling a long list
of tasks and responsibilities on top of the emotional burden
of the cancer. It’s a daunting role—and one that can
take a physical and emotional toll.
The impact of caregiving
Caregiving can be an overwhelming juggling act that requires
a great deal of adjustment. While it can be physically
exhausting, it can also test emotional resources, as
caregivers may grapple with helplessness, grief, anger,
guilt, anxiety, depression, and loneliness—on top of a
long list of daily tasks and responsibilities.
“One of the most common things caregivers experience
is helplessness,” explains Katherine Puckett, PhD,
MS, MSW, LCSW, national director of mind-body medicine
at CTCA. “All of a sudden, they’re thrust into this
and they don’t know what to do.”
Dr. Puckett suggests that caregivers focus on being
rather than doing. She sees caregiving as a balancing act
among three things: being present for the patient, managing
practical tasks such as going to doctor appointments,
and maintaining an emotional outlet for the stress and
the emotions associated with seeing a loved one battling
cancer. This emotional outlet could come in the form of
counseling, journaling, painting, or whatever helps the
caregiver process feelings.
Communication and self-care are critical for navigating
the emotional roller coaster of caregiving. “There is a huge
need for communication,” Dr. Puckett says. “So often the
patient and the caregiver are not communicating because
they are afraid of hurting each other’s feelings and neither
one wants the other to see them cry.”
Dr. Puckett says that communicating openly and
spending time together where the focus is not on cancer
can help both patients and caregivers navigate the emotional
trauma they are experiencing.
Many caregivers develop a sort of superman complex: they
want to do it all and do it all by themselves. Ironically, in
the midst of doing it all, most caregivers suffer from the
fear that they are not doing enough.
“Caregivers face burnout when they feel like they don’t
have the right to come first,” Moore explains. “Everything
and anything is always about the patient because they
don’t want to leave one stone unturned. So, our job is to
continually remind them of the consequences if they don’t
recognize what they’ve done, how much they’ve done, and
that there will need to be downtime.”
CTCA is unique in this approach, providing comprehensive
support for caregivers in the form of counseling, massage,
reiki, and other mind-body treatments. This caregiver
support is critical because a healthy caregiver will be better
able to take care of a patient. It’s clichéd for those who fly on
airplanes, but true: in case of emergency, secure your own
oxygen mask first.
“One of my most important roles is not to let stress take
over my life,” Chrissy explains. She knows that taking
care of herself allows her to take better care of DeArthur.
Chrissy takes at least an hour for herself every night, soaking
in the bath and letting the stress and the tension dissolve.
“It’s okay to take care of you,” insists Joanne Ludwig,
who served as a caregiver to her friend Wendy Miller
when Wendy was diagnosed with stage III colon cancer. “I
would strongly encourage caregivers to have massages and
Joanne had significant experience as a
caregiver even before she helped care
for Wendy; her 22-year-old son has
Asperger’s syndrome, and she works
as both a special needs advocate and
a life coach for adults with Asperger’s.
When Wendy needed a caregiver,
Joanne’s skill set and flexible schedule
made her the perfect candidate for
Joanne and Wendy’s was a new
and burgeoning friendship. They met
through their participation in a spiritual
group, and when Wendy was diagnosed
with cancer something just
clicked. Together Joanne and Wendy
learned the nuances of the caregiver/
patient relationship—and they both
reached the same conclusions:
- The patient needs to relinquish
some control and accept help.
- The caregiver needs to follow the
lead of the patient.
- There needs to be a team of support
because the caregiver cannot
do it all alone.
“Let people be who they are,” suggests
Wendy. She says that the caregiver
really needs to follow the lead of
the patient and simply remain observant
and know when to step in. She recalls
how she stubbornly resisted the
need for a wheelchair at the airport—
until Joanne insisted one day. “She
recognized that sometimes I didn’t
know my own limits; and when the
time came, she didn’t ask, she told,”
recalls Wendy. And Wendy acquiesced
because she trusted Joanne.
That trust was the result of a solid
caregiver/patient relationship. Joanne
somehow struck the perfect balance
between caregiving and allowing for Wendy’s need for independence. “Let
the person do as much as they can for
as long as they can because they have
so little control in their life,” she explains.
Although Joanne was Wendy’s primary
caregiver, she didn’t do it alone;
there was a whole team of friends
and family providing support, which
was critical. Wendy insists that there
should be more than one caregiver.
“You can’t be everything,” she says.
“Caregivers need help, too. Keep a list
of names and numbers and bring in
other people to help.”
Caregiving is an exhausting, rewarding,
and hugely important job. “I think
it’s important for society to really comprehend
that the success and the outcomes
of cancer patients are hugely
dependent on caregivers,” says Moore.
Caregivers play a vital role in the
fight against cancer. It’s not easy, which
is why the proper support and resources
are imperative. “If I could tell
caregivers one thing,” says Chrissy, “it
would be to pace themselves because
this could go on for a long time. You
don’t know how long you’re going to be
in the battle, but you have to be ready to
fight every day.”
1. Caregiving in the US 2009. National Alliance for
Caregiving in collaboration with AARP. National
Alliance for Caregiving website. Available at: http://
formatted_w_toc.pdf. Accessed November 7, 2011.