Live Well and Love Well

by Clara Chiu

Photos in the TV StandI like to think of myself as the quintessential all-American Chinese daughter, born in the early sixties to immigrant parents in the global post-WWII baby boomer era and at the fringes of the Civil Rights movement.  My parents were Steve and Debbie, who immigrated from Hong Kong and Mainland China respectively and attended college in the US.  It always amused me that they selected such all-American names for themselves.  Growing up was as all-American as baseball, apple pie and Chevrolet, served up with a big pile of Chinese daughter filial piety and love with a capital “L”!  Yes, my family played catch and went to Dodger games and then to Chinatown for late night chow fun (wide rice noodles) and jok (rice porridge).  My first apple pie was probably from McDonald’s and yes, my dad drove the ultra-cool 1963 Chevy Impala until it was stolen too many times.  For sure, family meant time together and time spent with extended family.  There was an on-going parade and a wide assortment of aunts, uncles and cousins.  Love with a capital “L” was a home cooked meal and a hundred dollar bill in your pocket.

Underlying my family experience was the strong sense that we needed to “to be of service,” and some sort of Confucian slang that “you owe me” and if you think you are a free citizen – think again.  Also, it did not seem that I had the stereotypical “Tiger Parents” – not the “be a lawyer or doctor or even marry one” kind of situation.  I had more of the Like Water for Chocolate, Joy Luck Club melodrama.  The “you were born to care for me in sickness and health” kind of alternate reality.  When my parents fell ill, I fulfilled my own destiny as a dutiful daughter and I had anointed myself to be their chief caregiver.  Both my parents had suffered varying degrees of prolonged illnesses.  The time was when I was in my thirties, when I had just learned to better accept my baby fat and had an exciting career with a big fat expense account!

Steve and Debbie, my all-American Chinese mom and dad, both passed away at 65 years young and ended up dying within six months of one another.  I comfort myself with the fact that theirs must have been a real love story – even though it was a little hard to tell when they were alive.  But mostly, I hope they are together, healthy without illness and are enjoying luv with a cutesy “u” and no “e”.

In my parents’ home, no one could say the “C” word (not that one – cancer!) and if someone died my ESL mom would deftly use German to describe their end – and whisper “Uncle is kaput!”  My mother bravely suffered from kidney failure and we performed dialysis for her at home – which is a whole other Oprah segment.  She ultimately succumbed to cancer.  My dad had diabetes, was a life-long smoker, and had some undiagnosed mental “I am your Chinese father” condition and subsequently had a heart attack.  Both of my parents passed away at home, my father more dramatically in my arms when his heart failed him with paramedics enroute.  My mom’s passing took the longer, more scenic, hallucinogenic, hospice route, and she slowly came to her last breath on her own accord.

The whole of my caring for my parents is probably the most difficult and influential experience of my life and continues to define how I live my life today.  My experience as a caregiver infiltrated my mind, body and spirit, my cultural identity, my idea of family, and certainly my identity as an all-American Chinese daughter, including my attitude about men, jobs, karma…

My parents’ funeral photos still sit on my TV stand, my favorite TV show is Six Feet Under, and on a first date, I asked my now-boyfriend how he wanted to be buried – true story!   Thank goodness I got a second date!

Navigating my parents’ Chinese emotional and physical health and the health care system was at the same time so scary, so surreal and overwhelming.  The care and feeding of my parents became my obsession.  As they were trying to survive, I was trying to survive it.  My tactic was a “take no prisoners” approach – fueled by family and that love with a capitol L.  I went to every medical appointment and treatment.  I asked questions of questions to any medical professional who would listen.  We integrated every health and healing modality: western, eastern, energy healing and offerings to the ancestors for a miracle.  I made sure that neither my mom nor my dad was ever alone and orchestrated a menagerie of support.  I could probably now run a small country or see our armed forces into battle.  Every time I boarded a plane for “my other job” I would break down in tears from pure fear and exhaustion.

I would give anything to have my parents alive, but relief from the tyranny of caregiving came after their passing.  I would not change anything I did, but I would not wish it upon another human being.  Now and then, I wonder if I could have done more for my parents.  Sometimes I wonder, was it their own journey to take without me at the invisible helm but rather in the supporting role as “the daughter”?

Was my hyper-vigilant care the pinnacle of some divine Joy Luck Club pyramid scheme that paid off for my parents?  Or was it simply the right thing to do…?   There were times I thought, “Did I miss taking the class on how to deal with this?  Seriously, can I pay or beg someone to help me?  Or can I just fly away from everything like a butterfly?”  How much do we sacrifice? Will that help them to feel better?  Will it extend their lives?

My caregiving muscle memory is still strong and continues to respond to the memory of my parents, to any person, animal or thing that feels ill and for anyone who is caring for a loved one.  My instinct is still in overdrive and I want to start to help or dole out advice, whether they want it or not.  As a result of my ultimate caregiving experience, I became an expert and advocate for good care, I realized the resiliency of the human body and spirit, and I learned how I want to get to the other side of the road.

After my parents passed away, I seriously considered a position as a patient advocate.  Vigilante Patient Advocate for hire!  I became an expert in navigating the health care system and how to advocate for making sure you or your loved one received the best care.  I became the go-to person in my family and among friends when they faced their own personal illness or that of a loved one.  When a comrade in caregiving shares that they are so overwhelmed with the obligation, I try to pass them the wisdom stick by saying, “Do what you can so you will have no regrets and can sleep at night.”  My DNA does not allow me to tell them to try to do less, but I desperately want to. More than a decade later, I am still ready to fight the good fight, to not see another one suffer – to covertly continue my destiny.

The capacity of our souls to cope is amazing as is our survival instinct.  I realized that no matter how sick you are and no matter how scared you are, you want to live.  My parents battled and lost.  I can look back and say that it must have just been their time because I know we did everything we could.  My dad was this sort of twisted-Buddhist-pseudo-zen-earthbound soul.  He was known to announce that he was going to pray a million prayers and go straight to the heavens, like he wanted to go that day.  But in the end he legally opted to have lifesaving procedures before we were to let him go – he said to “try three times”!

My mom, on the other hand, had a more earthbound attitude of “I love life, I love cooking, I love my family and I love to eat chicken legs – tru dat!”  My mom’s cooking was true love expressed.  I still relish the memory of the last thing my mother cooked for me and by this time she was already pretty sick.  In a moment of seeming normalcy, she made her Chinese sausage fried rice.  I silently cried while I ate the entire bowl; if you have had my mom’s cooking, you will understand why.  For her ending, my mom opted for no extraordinary lifesaving matters.  We did not want her to suffer but we did not want her to go, without trying, at least once.  For me, both of my parents’ end-of-life decisions were so intriguing, so profound, so life affirming, that I now sport my humble life motto: live well and love well.

The caregiving of Steve and Debbie carved a groove in my life map.  I’m now looking down the tunnel of my golden years, and I find myself thinking about my own journey to the other side.  I try not to talk about it too much, especially for my boyfriend’s sake – it makes him sad.  You see, we don’t have kids, so the immediate familial torch of caregiving stops with us.  Like I said, I would not wish my reality of the experience upon anyone, not my beloved brother or, God forbid, my nephews.

Sometimes, I am not sure who I want to go first.  I would worry about my boyfriend so much if I passed before him.  I would miss him so much if he went first.  So I dream that a long time from now, we will go like James Garner and Gena Rowlands did in The Notebook – Oh yes I did, oh-so-sappy and oh-so-awesome!  One night we will say good night and slumber together forever.  Someone will peek in on us and they might feel sad that they did not get to help us – but we’ll be glad that they didn’t have to.

But we both would know that if they had needed help from this Chinese American daughter, I would have been there.

This is dedicated to my God Mother (Kai Mom), Rosita Tong. She has been a caregiver for her husband, who suffered two brain aneurysms. She cares for my Kai Dad – at home – going on 17 years. I love you.

Clara Chiu currently serves as the Development Officer, Major Gifts and Executive Assistant for Asian Americans Advancing Justice – Los Angeles’ President and Executive Director.