Cousin
Claudia's
Confessions
From
My
Inner
Hippie
About
Hospital Stays
by Claudia
“Shamana” Gold, M.S., M.P.H.
I
didn't learn this from graduating from the Columbia University School
of Social Work. I didn't learn this from working as a social worker
in hospitals for 19 years, or from being a yoga teacher. So I want to
tell you how I finally learned five keys to getting your needs met at
medical centers. My breakthrough began when I was teaching college
classes at night, and taking my lively artistic daughter to her
home-schooling park days during the day. Like everyone else I was
buying groceries, washing dishes, and always wanting to get rid of
clutter much more than doing it. There were soulful, loving moments,
and ego challenging moments with my husband. Then one day I went to
Dr. Patel's office with my husband John for his colonoscopy. At the
end, Dr. Patel told my woozy husband and I that it looked like he had
rectal cancer and that he would probably need a bag.
After
John was officially diagnosed with colo-rectal cancer, and before his
hospitalization at USC Norris Cancer Center for surgery, I felt
alone, angry at a nurse specialist who did not call back, and weird -
like a poster child for anxiety. And I was supposed to know how to
handle this. As a social worker I'd told others how to a thousand
times at Long Beach Memorial and Children's Hospital of Los Angeles.
It
did not help that my husband’s favorite cat Junior ate our
daughter’s three inch, pink rubber alien and some black elastic
thread and also required abdominal surgery. Was this some sort of
omen? Some sympathetic gesture on the part of the cat? And though we
could not afford Junior's $3,000 surgery – could we let him die
now? After we sprung for Junior's surgery, I held my breath,
thinking somehow if the cat could survive, so would my husband. If he
did not do well...that wouldn’t be so good.
As
a university professor, and stress management trainer who had been
schlepping and being codependent as a medical social worker for 19
years, I felt guilty and surprised at what it felt like to be on the
other end. It was as if my life as a social worker had been the black
and white movie, and now, it was in living (or dying – I wasn't
sure) color. The colors were bright and scary. I kept hearing in the
remaining lobela (Yiddish for remaining healthy lobe of your brain
when you've had a Jewish mother and your husband has stage four
cancer) what I had told clients (and frankly, I'd even gotten a
little sick of saying it): that they would feel like they were on an
emotional roller coaster. But it was oh so different on my own
emotional roller coaster. There were emotions showing up that I
couldn't even recognize, and others that I didn't want to.
One
morning I decided it was time to call the friendly phone counselor at
Cancer Care for support, but could not find the slip of paper with
her number. I wandered through the house, into the bathroom – what
had I been looking for? Not sure, I grabbed a necklace blessed at
Lourdes with three medals of Catholic saints on a black thong, that
my nurse friend Pat had once given me, and put it around my neck,
just in case. Though I felt a twinge as I was raised as the daughter
of the Rabbi of Las Vegas, and am a Baha'i, at this point “The Lord
is One” took on new meaning.
The
week before the surgery, one morning I got up to go to the bathroom
and my left foot did not work. After x-rays, as I hobbled around on
my new air cast, I began suspecting that my physical body was
expressing something I had not been able to - that I was afraid that
I couldn’t walk through this journey of illness and
hospitalization. Or maybe I needed to lay down for a while and
prepare for my life changing wildly in the next few years? Or had I
just tripped, unaware, while gardening in our lumpy back yard – the
one which caused us to buy the house cause it reminded John of his
native West Virginia.
Nevertheless,
there was a lot to do: I got my college classes in some wild
semblance of order. I had one class in Culver City that was
reflecting my stress and it wasn't pretty. I called the nurse at the
hospital, wanting more info about the planned ileostomy, and left my
third message in two weeks - I wondered maybe she didn’t like me.
With each phone call to ask for help, I agonized, as I didn’t want
to bother anyone, everyone is busy - would they say no? (This was a
moment for a crash course in assertiveness and Codependency). I asked
a combination of friends and, especially, one relative, to take care
of our eight year old daughter for a week.
Two
days before surgery, after eating tempeh balls at a Vegan restaurant,
I got a sudden fever and stomach problem, and worried if I would be
able to go with my husband to the hospital. Anxious and stressed out,
I called my relative to make the plans for child care. She was so
sensitive – she totally picked up on my stress. One of us hung up
on the other and I got a phone message that she wasn’t taking my
daughter for the week. , on my way to teach my
college class my mind was like a tape recorder playing over and over:
How could a relative back out at a time like this?!
The
day before the surgery I phoned the honest and loving social worker
who ran the support group for people whose spouses had cancer what to
bring to the hospital. We both believed in having family or friend
stay with the person at the hospital, and had seen bad things no one
wants you to talk about happen even with a loved one present, but
especially when no loved one was present. She said to bring a couple
of tops, a couple of bottoms, a couple of pairs of underwear. The
night before the surgery, however, as I packed, I kept sticking more
things I might need into my purse, then into a tote and the overflow
in a rolling duffle bag. I hadn’t known what stresses my clients
and their families and friends might go through before they even got
to the hospital, how much my mental health and theirs would be
challenged. At the last minute, a friend of a friend whose mom was a
cancer survivor offered to take my daughter for the week. Her name
was appropriately Angela.
In
the early morning, on the way to the hospital for the surgery I
forgot to make a turn off the freeway and made us late for John’s
surgery. Instead of being loving and supportive, I had stressed my
husband out before his surgery. Bad caregiver.
On
arrival in the pre-surgery waiting area, which was divided into small
areas like horse stalls, my human intellect ceased to function, I was
anxiety personified, especially when an aide arrived to wheel John to
his colonoscopy. A little faklempt, with a wonder if they could
possibly want my husband to have a colonoscopy prior to colo-rectal
surgery, I told the aide my husband was there for surgery. He left
the stall and didn't come back. I was horrified when next an intern
with a deep voice and unfamiliar accent arrived and read through my
husband’s chart as if it was the Tibetan Book of the Dead. After
they wheeled him a few feet into surgery I was deeply reassured by
the surgery nurse’s violet surgical cap, her blonde hair and
cheery smile which I will always remember, and felt confidence at
seeing the anesthesiologist's earrings and eye shadow. When I left
the waiting room and took the elevator to the cafeteria a male
stranger smiled at me, and I felt hopeful, over the top hopeful.
Finding
the silver tap to get water in the cafeteria was an accomplishment.
(I later learned from psychiatrist friend Dr. Ebrahim Amanat that
there is a name for this unfamiliar out of the world state:
hyper-realization, and one can be thus transported at
meditative as well as crisis times). Despite it having a name, it was
very odd and disorienting, as you may know, if you have been through
this.
The
hospital stay was eye-opening, and I am not referring only to the
automatic doors from the ICU near my husband’s room swinging open
30 times a day, jolting him out of his sedated rest. After our cat
Junior, my husband, and I survived the first hospitalization, and
lived through a few daytime hospital soap operas, I started having
some remarkable Aha moments at hospitals, excited to find ways to get
everything, or almost everything John and I needed there, some of the
time (I will save my tip about sticking your water bottle in the ER
entrance door so you don't have to wait a half hour for busy staff to
let you back in, for another treatise). I hope the tips shared will
help you be less anxious, angry, or alone, and to feel empowered by
being skillful, centered, and loved (you are the best for being
there), if you are called upon to be with your loved one at a
hospital one day. These are five keys to helping keep your heart
happy and warm at a hospital in an imperfect world:
 |
| - Abdu'l Baha |
1.
You have a right to ask anything again and again and you should.
– to avoid things falling into black holes. (Such holes are very
unpleasant and can summon paranoia, an unpleasant state that builds
upon itself and will not be recommended in any of the books it would
now be quite helpful to read about positive thinking). Take hospital
staff seriously as human beings. They are often undernourished
emotionally from giving in drastic circumstances. They may need hugs,
love, food, pens, rest, and have poysonal challenges. If you are
courteous you have a better shot of getting your needs met, and
you can ask for anything. Don't worry if a resident or intern does
not take your concern seriously, keep voicing it. Do not assume that
a note left on a chart for you to be called will be acted upon. To
reach doctors, as Dr. Leslie Botnick, radiologist (and my first
cousin) at the John Wayne Cancer Institute advises, “Call five
times a day if you need to. It is a doctor’s job to call you. You
should expect a response.”
2.
Get organized: Keep a notebook or use your handy device for
keeping track of what is happening, what should happen, and when.
(Shameless ad: I'm working on my book/journal about hospital stays
now). Let it be your second mind. Keep it handy for jotting down
doctors' input, such as after a surgery or during early morning
rounds. In it, also keep logs of when you asked for what so you have
a better sense of control. You might note there if your loved one is
acting weird after receiving a certain medication so you can alert
staff when your loved one sees flies on the wall and before he or she
thinks he is a fly.
3.
Share your craziness. Share your sadness. Otherwise, unexpressed
feelings come out unexpectedly. Example: I and other strangers would
testify to the gentleman in a suit screaming in admitting at USC
University Hospital for his wife to finally get a room. This is a
good technique to use if desperate, as I learned when this gentleman
and his wife were helped before us and we were first and waiting a
long time. The other piece I learned from him is to tell everyone in
the room how your loved one's surgery was botched at that hospital
and then they help you quickly to shut you up – it's bad PR.
Join
a support group. Ask friends, counselors, how often you can call
them. You may be surprised – as I was. Keep a list of your support
team’s phone numbers. Listen to touching music or watch a sad
movie. If you have children, help them in releasing feelings in
these ways, and if you're not available have others help them. (And
breathe deep into your feet to help ground your feelings. You can
even imagine you are a tree with roots into the earth, or that your
feet have magnets on them. You might walk in sand, massage those feet
with lavender lotion, or stop at a massage shop for foot massage.
4.
Avoid taking things personally. Perhaps a relative has a few
personality disorders and is behaving badly, and you never should
have had them involved in the first place, or a staff member doesn’t
get it, a doctor ignores you, your loved one who you are helping a
lot, and you have some past baggage with, is grumpy. Tell yourself
that this has nothing to do with you, it is the situation, and stay
purposeful, focused step after step on advocating for your loved one.
Stay as centered as possible. (Caution: People who are difficult
generally make things much more difficult at a difficult time. Family
and friends who have not been involved before will likely be about as
involved now, not rise to the occasion, you might expect. And
unexpected good folks will likely show up to help).
5.
Respect your loved one’s needs. And your needs. Ask if your
loved one needs quiet, space, music, a foot massage, to be read to,
the temperature adjusted. If the room is noisy, or has a bad view,
you can ask for a quieter room with a view for when one becomes
available, and you very well might get it. Respect your needs.
During weeks before the hospitalization (if you have any lead time)
use your favorite stress reduction tools intensely, e.g. massage,
bubbly baths, nature walk. During this time, avoid personal and
professional confrontations. At the hospital, on a spectrum of when
you feel overloaded, choose when to leave the room, when to walk down
the hall, into the hospital gardens, or go home. The soap and water
of shower or bath becomes a blessing at such times. And don’t feel
guilty. You can leave when you are least needed. Bring gifts to the
hospital for yourself, you deserve it (and some sprigs of flowers and
edible gifts for staff).
Wish
you the best. Although I shared some of my reactions to ventilate and
to prepare you in case you feel really unusual going through a loved
one's diagnosis or hospital stay, hospital stays can bring unexpected
blessings, even treasured moments with healing angels disguised as
nurses and doctors, and...even...dare I say, social workers. You and
your loved one will, I can't promise when, deeply appreciate each
other like you may have forgotten to before. We don't have control
over some things, but using the control we have can bring joy and
empowerment to help balance out the times we are riding on the
emotional roller coaster.
***********
Claudia
Gold is writing a forthcoming series about Loving Your Life When ____
Happens, is a writer, expressive arts therapist and coach, who was
encouraged in writing by Leo Buscaglia in whose Love Class she
participated. She is a mom, has four or five cats depending on what
her daughter brings home that day, and is a former kundalini yoga
teacher, massage therapist, and Santa Cruz hippie.
Copyright Claudia Gold, 2012, All
Rights Reserved
