Stories

Care Divided

PorchChairs-resized.jpg

Caring for a loved one with cancer builds a relationship like no other.  The patient-caregiver bond is strengthened moment by moment as you work to defeat the enemy together.  Together as a team battling side effects.  Together as a team when scan-xiety visits and refuses to leave.  Together when the results are good and together when the results are bad.  Together trying to gain a sense of control.  Knowing that you are stronger together.

But, what happens when the team becomes divided? 

What happens when the strength of togetherness shatters? 

How does a relationship with so much on the line diminish?

In a perfect world, relationships would be a blend of give and take.  However, in the patient-caregiver relationship, the patient ultimately decides what is best for them.  It is the patient that dictates if they want surgery, or additional treatments, or if they really want to try a clinical trial.  It is their life and as it should be, their decision.   When a caregiver doesn’t agree with the patient decision, what happens then?  It’s not easy to accept a decision you may not agree with especially when you’re fully invested in the potential life and death outcome.  

What happens to the caregiver when a patient no longer needs or wants them on their team?

How does a caregiver move on knowing that their care is no longer desired?

How can a caregiver learn to care again? 

All relationships are complicated and require constant nurture and attention.  The patient-caregiver relationship is a delicate balance – a balance built on life and death decisions.  A balance of its very nature born from suffering and despair.  A balance that requires compassion and empathy.  A balance that changes from moment to moment.  A balance created by an enemy who leverages all control. 

Despite differences in opinion, can the patient-caregiver relationship be restored?

Is there a possibility of compromise – a possibility of regaining the strength of togetherness?

Can both the patient and caregiver find a balance that works for them?

As a caregiver, I have lived through the heartbreak of care divided. I know firsthand that it is possible to compromise and re-create a meaningful patient-caregiver relationship.  It isn’t easy, and there are days when I feel helpless.  There are days when I feel I should be doing more.  But, then I step back and realize that I am providing the type of care that is asked of me.  And, in the end, I realize that we are united – not divided.   A relationship like no other. Knowing we are stronger together and working to find a balance.

Taking Care

Martha and Father.jpg

Forty years ago I lost my Dad to colon cancer. 

Before my Dad became ill, my childhood was carefree, filled with joyous family vacations, friends, beloved pets, school projects, music and dance lessons.  Inevitably, when my Dad became ill our family life changed forever.   He was in and out of the hospital for over three years prior to his passing.  I knew that surgeries, tests and procedures were taking place, but was too young to understand.  I did understand, however, that our family would never be the same. 

My carefree childhood days were gone.  I was no longer free of care.

As I reflect on this time, I realize that in many ways I became a caregiver at a very young age.  Responsibility, compassion and empathy became my focus.  I knew that in small ways I could help my Mom, Dad and family.  I had to do something to help ease the suffering our family was experiencing. 

Children may not be typical caregivers, but since I didn’t know that at the time, I persevered with my plan to help an out of control situation become a little bit more bearable.  I controlled what I could - by helping around the house without being asked, taking care of our beloved dog and cats, practicing my music lessons every day, and by making sure I was a straight ‘A’ student with afterschool activities to keep me occupied. 

My goal was to be dependable and responsible.  I was taking care of the things I could.

A few short years after my Dad passed my Mom was also diagnosed with colon cancer.  My role as a college age caregiver began, and I tried to do all I could to ease her suffering – to comfort and provide love and support during her final days.

Today, sadly, a new generation of children and young adults are trying to sort out the complex feelings as they help their Mom or Dad cope with this devastating disease.  Understanding these feelings and the need to help our youngest caregivers has led me to focus on creating educational and support programs for children, adolescents and young adults.  It’s vitally important to support our young caregivers, as they support their loved one.

We all understand that cancer affects the entire family, but for me I feel that it also shaped my life into who I am today.  My life’s purpose was defined so long ago.  This sense of purpose keeps me grounded in my patient and caregiver advocacy work. 

Taking care of those we love.  I can’t think of a more fulfilling or important purpose in life.

Empty Chairs

Loss.  Loneliness.  Emptiness.  The feelings are palpable. 

In my dining room I have the antique chairs (circa 1870) that once filled my childhood home.  My family home was once a Civil War Stagecoach Inn, a landmark filled with rich history.  But to me, the home where I grew up was all about family, security, unwavering support and love.

When I look at these chairs, the chairs where my Mom and Dad once sat, I reflect on all of life’s occasions where their presence, laughter and conversation is greatly missed.  From Graduations to Holidays; Birthdays to Baby Showers; and from Sunday Dinners to every day milestones both big and small.

My reflection leads me down the path to ask what life may have been if my parents had not been diagnosed with colon cancer while in the prime of their lives.  I don’t like this turn in the path – even after so many years, this thought takes me back to the time of their deaths.  To the time when nothing made sense to a young girl in 7th grade losing her Father.  Or being a senior in college losing my Mother – my best friend and confidante.

We all have experienced great loss.  No one is immune to the sick, gnawing feeling that we carry in our hearts.

We go about our daily lives, cope with our own unique feelings the best we can, and in many cases put on a brave face in front of others.   For me, the best way to cope has always been to help others understand this disease, and to advocate for prevention and screening.  And so for the past twenty-five years I have tried to turn my pain into a purpose, becoming a passionate colon cancer advocate.  As Katie Couric said, “Sometimes you find your passion.  And sometimes your passion finds you.” 

Trust me, I wish this passion never had to find me.  I wish I had never heard the words: colon cancer.  I loathe this disease, and what it did to my family.  But helping others has been and will continue to be my passion, and in doing this work, I keep the spirit of my Mom and Dad with me. 

Medical advances are significant since my parents were diagnosed in the 1970s and 1980s.  A generation ago, there were not screening tests readily available for patients experiencing symptoms.  Colonoscopy was in its infancy and still in clinical trials.  Exploratory surgery was the diagnostic tool of choice.  I recall in my Mother’s case, the surgeon saying, “We opened her up and all we saw was cancer, there’s nothing we could do, but close her back up.” 

Those words haunt me every day. 

Today, however, there are screening tests, colonoscopy and options available.  We have the knowledge and the tests today to help eradicate colon cancer.  We can do this.  We can help alleviate the suffering a colon cancer diagnosis brings.  We may not have had these resources to help prior generations, but we do now.

I hope you’ll join me in this call to action:  During the upcoming Holidays, take a moment and ask your loved ones about your family health history.  Do you have any colon or GI cancers in your family?  Do you have any symptoms or feel that something isn’t quite right?  Trust your intuition and ask your healthcare professional for a screening test.  Screening is the smart choice.  Do this in memory of those who didn’t have a choice.

In honor of my parents, Margaret and Patrick, I remain passionate about eradicating colon cancer.  Please join my efforts so that another family does not have an empty chair where a loved one once sat.