Wednesday, June 27, 2012

Loving Your Life When Your Loved One is Diagnosed With A Scary Illness

Cousin Claudia's

Confessions From
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


Tarot By Arwen said...

Thank you for this. My mama spent a lot of time in a hospital. My sister was the one who stood up for her. Being an advocate does mean you have to take care of you! And Leo B was a favorite author of mine. :D

The Body Blessing said...

I just saw that I had not replied to your comment, which I am thankful for. Leo was such an inspiration.