Caring For Those Who Care: Erica (S01E10)

[MUSIC PLAYING] My name is Stephanie Erickson,
and I’m a social worker and family caregiving expert. In this series,
we’re sharing stories about caregivers across Canada. Erica would never call
herself a superhero, but I don’t really know
what else to call her. She’s a mom, a wife, and
caregiving for her husband who has recurrent brain cancer. The treatment has had a lot
of side effects, one of which is her husband’s
declining memory and some personality changes. Yet, somehow she
remains grateful, and she’s keeping what
matters most in perspective. This is Erica’s story. My name is Erica [INAUDIBLE]. I am a wife, a mother of two
children, and a caregiver to my husband, Jack. I never expected caregiving to
be such a big part of my life. I never thought that my
relationship with my husband would transition as quickly as
it did to being a caregiver. When you marry
someone, in the vows it’s in sickness and in health. We definitely– we
live that every day. Jack was re-diagnosed with a
recurrent glioblastoma brain tumor. I’d say he’s at a 50%
of what he used to be. His ability to focus on
tasks is greatly diminished. One task at a time is
where we are right now. I find that I have
to keep him on task. And so it’s creating the
alarms and the systems in place to keep
him on task, so he can feel like he contributes. And he can, to a certain
level, very much contribute. Cancer touches all Canadians. 11% percent of caregivers in
Canada provide care for someone with cancer. Caregiving for a spouse accounts
for the most hours of care. And 25% of caregivers are
also taking care of kids. My parenting style
hasn’t changed. My willingness to
let things go has. Time isn’t something
we have a lot of, so use the time that you
have to play with your kids. There is homework
that has to get done and diapers that
have to be changed. That’s a given. You cannot avoid those tasks. But it’s a more relaxed, not
hurried style of parenting. The best parts of my day
are the mundane, normal mom tasks, because they’re
not identified by cancer. Cancer didn’t define that. And it didn’t bring
it to our house. My children aren’t a
distraction of life, but they’re a
distraction from cancer. It’s a time when we’re
not thinking about cancer. Cancer doesn’t exist when
we’re playing on the swings or unpacking a lunchbox
or doing math homework. It’s just me and the kids. STEPHANIE ERICKSON: What
I admire most about Erica is that she has not
forgotten about herself. She always carves
out time for herself, because she knows that without
taking care of herself, there is no way that she
could support her husband or be present for her kids. ERICA: A source of inspiration
for me has been triathlon and other triathletes. It has not only
given me inspiration, it’s given me an outlet. When I am out running, it’s
where I can finish a thought, I can process an emotion. It’s not always a
positive experience. Sometimes, I cry
when I’m running, because I don’t want to
create a negative, sad space in our home. So it’s my time to be
sad or to feel great. It’s a safe place where
I can process things. Caregiving, it’s almost
like a competition. You compete not to win but to be
better than you were yesterday. And better doesn’t
have to be stronger. It can be calmer. It can be more patient. And it’s a process. No one gets up and
wakes up and is great. And it’s the consistent
small efforts every day that build and build and
build and that get you there. And it’s the consistent
small steps that we take in our house that get us there. STEPHANIE ERICKSON: I
bought Erica a gift to thank her for sharing her story. I got her a yearlong
membership to the gym at the local community center. I really wanted to celebrate
her commitment to self-care. ERICA: Advice for
other caregivers is to not give up on
yourself, not to lose yourself in this process. Because you are
who you were when this whole started, and you
need to remain who you are. Your identity isn’t
being a caregiver. It’s one hat you wear. Obstacles are part of life. They’re to be expected. And it’s your attitude
towards them that can make all the difference. The difference between an
adventure and an ordeal is your attitude. [MUSIC PLAYING]

One thought on “Caring For Those Who Care: Erica (S01E10)

  1. I am an advocate for patients with operable GBM/AA. Their is a phase 3 clinical trial that has finished enrollment but is expected to present to the FDA/Health Canada sometime in 2019 and may even be available for compassionate use. The vaccine has reversed over 60 terminal diagnosis in its span of studies/clinical trials. It was developped by UCLA and studied in Canada/USA/Europe. What I am hoping to indicate to patients is the importance of saving tumor tissue frozen. Hospitals have yet to fully commit to saving tumor tissue frozen, they are still parafinizing tissue which is of course a wax. Parafinization does not ensure the viability of the cancer,. If your husband requires surgery again and is not in any other clinical trial I would recommend asking the hospital to specifically save the tissue frozen. If they cannot, consider switching hospitals, or private biobanks like can save tumor tissue and work internationally. My website has identified potentially valuable combination therapies and reasoning behind the combinations. Full disclosure I am a shareholder in NWBIO, manufacturer of northwest biotherpeutics, and I do not have any formal medical education.

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