Elephants and Tea - September 2019 - 24

Caregivers

FINDING COMMUNITY

Surviving as a Caregiver

T

hough I'm a young adult cancer survivor, having been diagnosed with
Hodgkin's Lymphoma at the age of 24, I first heard the words 'you have
cancer' said to my mother two years before my own diagnosis. She was
diagnosed with a glioblastoma multiforme (GBM) when I was 22 and just
finishing up my undergraduate degree. I was thus hurled into the world
of cancer as a young adult cancer caregiver. For much of my mother's illness, she was
very self-sufficient. She continued to work, traveled to Duke University for some of her
care while having chemo and radiation done closer to home (Illinois), and maintained
as much of her normal schedule as possible.
Watching this façade of normalcy felt like a mask I wore nonstop. There was always
a countdown going on in my head, ticking towards the amount of time the statistics
warned we all had left together. Yet here she was going to work, cooking meals, maybe
resting a little more than usual. You'd never guess that something life-altering had
entered her brain and started causing trouble. She worked hard to maintain that
façade, along with the help of my dad, and it drove me crazy. I seemed to be the only
one having trouble acting as if everything was normal. As a 22-year-old watching
my mom go through cancer treatments, I experienced strong feelings of helplessness
and worry and yet here she was going to work, cooking meals, acting as if nothing
was wrong. A lot of my energy was spent in anxiety filled, internal dialogues that
impacted my ability to concentrate during my own day to day responsibilities of
undergrad finals and then eventually graduate school research and classes but here
was my mom...totally able to compartmentalize and act as if nothing was wrong.
"Was I doing this whole caregiving thing wrong?!" I thought to myself. "Am I
being silly getting so worked up about this whole brain tumor thing that clearly my
mom is handling just fine?"
Now, this is the point in a lifetime original, made for tv movie where a big fight
would happen. There would be tears, probably some yelling, and then they'd all end
up talking it out. The daughter would explain how isolating it felt worrying about her
mom and the future of their family while the mom and dad were seemingly able to not

24

ELEPHANTSANDTEA.COM
SEPTEMBER 2019

worry at all. The daughter, through heartfelt
tears, would describe how none of her friends
could connect with this idea of there being a
potential, not so far away future where her
mom would die. And they would all hug and
talk about how everyone was doing what they
needed to do to cope and keep moving forward
but that the daughter's feelings were valid and
normal and came from a place of love.
I did not have this moment with my family.
We didn't talk about scary things until they'd
already happened, and it was time to figure out
how to move forward. My mom said that we
had two options:
1. to hide under the table and cry, or
2. to keep on moving, so that's exactly what
we did.
But what was I to do with all these new
feelings and confusions when I didn't have
anyone in my life who was either willing
to talk or who had experienced something
similar? This is where Lacuna Loft came in.
In our online programs, I found other young
adult cancer caregivers. They were caring for
spouses or parents or siblings or friends, they
were dealing with chronic and long-term
cancer situations or with end of life scenarios
like I did, and they were often isolated from
their families and friends. They carried a life
changing diagnosis on their shoulders without
having any power to fix it.
Finding other young adult cancer caregivers
was life changing for me. I felt isolated and
scared and helpless and you know what? A
lot of them felt that way too. These feelings are
rampant in the young adult cancer community
whether you're facing your own diagnosis or
that of a loved one.
From these young caregivers I learned selfcare, how to be a better advocate for myself
and my family, how to more effectively communicate, where to apply for financial aid,
how to ask for help, and so much more. They
helped with logistics and emotions, but they
also made me feel like a whole person again,
a little bit more like the person I was before I
became a caregiver. For me, getting connected
to people who understood what I was facing
was crucial to learning how to face the new
life that cancer created.
➥ MALLORY CASPERSON,
SURVIVOR, CEO OF LACUNA
L OF T.
http://www.elephantsandtea.com
Elephants and Tea - September 2019

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