November 17, 2021
People who care for
someone with cancer are often called cancer caregivers. “Everybody who is
supporting somebody through the cancer journey is a cancer caregiver,”
says Joan Griffin, Ph.D., a
health care delivery researcher at Mayo Clinic.
Cancer caregivers can be
spouses, partners, family members, or friends. They take on tasks such as
administering medications, managing symptoms, and communicating with the cancer
care team, often becoming indispensable to the well-being of the person for
whom they care.
Here's what you can
expect when caring for someone with cancer:
The role will evolve
“I break cancer
caregiving into stages, just like we do with cancer treatment,” says Dr.
Griffin. “There is the early stage around diagnosis and treatment planning,
there's the active treatment stage, and then there's survivorship. There are
different roles for cancer caregivers along those stages.”
When cancer is diagnosed,
a caregiver might provide emotional support. A caregiver might research
treatments and providers who can offer second opinions. As cancer treatment
starts, a caregiver might accompany their loved one to treatment appointments,
help the person recover from surgery, and manage medications.
“When there’s a cancer
diagnosis, it’s actually a diagnosis for the family because the cascading
effects affect so many people,” says Dr. Griffin. For example, when a spouse or
a parent receives a cancer diagnosis, the other members of the household must
step into new roles while the person with cancer focuses on treatment and
healing.
Practical needs and
self-care come first
Providing care for
someone with cancer is a long-term gig. To prepare, Dr. Griffin recommends
reviewing health insurance policies to understand how your loved one’s care
will be covered, talking to your employer about your situation, and preparing
your colleagues for the necessity of time away from work.
Understanding how
communication will occur between everyone providing care for your loved one is
also key. “Talk to the primary care provider before treatment starts so you
understand what the communication pattern is going to be between the oncology
team and the primary care provider,” says Dr. Griffin.
Once these practical
needs are addressed, establish a pattern of caring for yourself so you have the
strength and endurance to care for your loved one with cancer. Make sure you
have the emotional support you’ll need, such as a circle of friends or a support
group you can touch base with when things are particularly challenging.
Establish an exercise routine that helps relieve stress. And lean on friends,
family or community resources to secure time for activities that bring joy.
“You need something that
brings you solace,” says Dr. Griffin. “Some way to help you cope and manage all
the stress that’s going to come with that role.”
Everyone will have big
emotions
“Patients often have to
manage and think about issues of grief, of grieving what their life was like,
grieving what they have lost because of the diagnosis, and not really knowing
what's going to happen next,” says Dr. Griffin.
Caregivers – especially
if the person they’re caring for is a spouse or a partner – may also be feeling
these things. The caregiver and the person with cancer are likely feeling fear
as well – fear of death, fear of losing a loved one, fear of the financial
challenges that come from losing income and paying medical bills.
“There are a lot of
things that caregivers keep inside, even things they typically may have shared
with the person with cancer,” says Dr. Griffin. “The caregiver is often not
going to share those things, because it's just not considered to be what a good
caregiver does.”
Dr. Griffin suggests
focused writing exercises to help caregivers deal with emotions and stressors
they aren’t comfortable sharing with a partner or a therapist. “It’s sitting
down and writing 15 or 20 minutes a day,” says Dr. Griffin. “It's very focused
writing about what you’re feeling and experiencing and the challenges you’re
facing. It’s a way to express emotions and purge them.”
Some caregivers may find
themselves caring for a family member with whom they have had a difficult
relationship. Dr. Griffin encourages people to set boundaries. “Being a
caregiver to somebody with whom you have a contentious relationship doesn't
mean they can treat you poorly, or that you can treat them poorly,” she says.
Even in situations in
which a caregiver has a good relationship with the person for whom they provide
care, there’s still often some level of family strife. Dr. Griffin recommends
telling the care team about these challenges, so they understand the situation
and can be supportive.
When family conflict is
an issue, counseling can also play a critical role. “Seeking out counseling is
an important avenue for people who are really struggling with some of the
communication issues that can happen during the cancer journey,” says Dr.
Griffin.
You'll need to advocate
for yourself, too
Don't forget to advocate
for your needs as well as those of your loved one with cancer. Talk to the care
team about your role as a caregiver, what you feel comfortable doing and what
you need from them.
“Physicians are focused
on the patient,” says Dr. Griffin. “Often, that means the caregivers are put to
the side a little bit.”
If you’re not comfortable
doing wound care or helping your loved one with bodily functions, let the care
team know so they can find someone who can help with that. Make a list of
questions to ask the care team when you go to appointments with your loved one,
especially if you’re managing complex medications. “It’s critical to have those
conversations early on,” says Dr. Griffin.
Many people who care for
someone with cancer are also working full time. It can be challenging to do
both. Find out if you have the right as a caregiver to take time off. Ask about
a leave of absence. If you take a leave of absence, are you able to return to
your job?
Having the option to work
can also be good for caregivers, as it provides structure and focus. “Work
sometimes can be a haven from the stress of caregiving,” says Dr. Griffin.
Despite the tremendous
challenges of caring for someone with cancer, there are also rewards.
Caregivers make a huge difference in the lives of people for whom they care.
“It can be overwhelming, it can be stressful, it can be burdensome," says
Dr. Griffin. "But people also find a lot of joy in it."
Watch Dr. Griffin discuss
cancer caregiving on the Mayo Clinic Q&A Podcast:
Learn more about
caregiving:
·
Caregiver stress: Don't forget
self-care
·
Caregiving: Tips for long-distance
caregivers
·
Caregiver stress: Tips for taking
care of yourself
·
Information for caregivers from the
American Cancer Society
Join the Caregivers Group on Mayo Clinic Connect.
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