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We Are All Caregivers

Written by Nik
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If someone were to ask you what it means to be a caregiver, what would you say? To me, I never really liked this word or title for that matter. So for me to be able to define caregiver or to understand its meaning was never an easy task. To me, being called a caregiver just irked me; not because I was caring for my mom, but because I didn't do it for a title. It wasn't a job I was hired for or requested, it was just something I did because I wanted to. Then ironically, this past June, I was asked by one of my former students who is involved with the Eastern Montgomery Country Relay for Life to give the “caregiver” speech. It was a difficult one to give, but in hindsight it has become one of my favorite. I often think about the speech I gave that stormy night in June at the Hatboro-Horsham football stadium. As I sew the tags on blankets, open the boxes of squares that pour in to our PO Box, message with blanket recipients and their family members, I think of my caregiver speech.

We are all caregivers within Project Chemo Crochet. Each blanket is made from 24 squares from around the country by people who CARE. Each blanket is stitched together by people who CARE. Each blanket is shipped using funds of people who CARE. People are requesting blankets for loved ones because they CARE. And this is what care giving truly means. It took me a while to come around to being open to this title, and honestly it wasn't until I sat down to write the speech that I finally had this epiphany. Below I have copied the caregiver speech that I gave at the Eastern Montgomery County Relay for Life. I encourage you all to read it for the sake of being a caregiver. J Enjoy!

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As I sat to write this speech, no words came to me. How was that even possible? I was able to write my mom’s eulogy in less than an hour and many other speeches before and after, yet I struggled with the “caregiver” speech. Then I realized why. I really dislike the title of caregiver. It was always something I shied away from. During this entire cancer journey, when I was asked “What is your relation to Marianne?”  I would answer “I am her daughter.” Then the follow up question would always be, “Are you the caregiver?”

Two years ago, I knowingly yet unknowingly inherited the title of caregiver. It was not one I ever wanted nor volunteered for. During the 2012 Relay I stood on this very track with my mom, arm in arm, and walked the survivor/caregiver lap. And as I helped mom stumble through the quarter mile, never once did it hit me that I was in fact her “caregiver” or even that my husband and 4 year old daughter who were walking beside us were also caregivers. My mom and I were walking together as a mother and daughter. A mother who is surviving with stage 4 breast cancer and a daughter who loves her mother and would do anything to help her through this journey.  In my mind, what I did and continue to do, isn’t the result of the caregiver title or description. To me, all I did was love.

My mom, Marianne, is (notice I do not say was) a single mother of two, a Catholic school teacher for 30+ years, a mentor and confidant to many, and most importantly, my best friend. On December 2, 2011, my mom at the age of 59, was diagnosed with stage 4 metastatic breast cancer. A few weeks prior when test after test was being ordered, reviewed, then never really fully discussed, we had suspicions that this would be the case. But my brother, mother, and I could never have been prepared for what we were about to hear.

Prior to my mom’s diagnosis, when I would hear of someone having breast cancer, my first thoughts were “ok get a mastectomy and some chemo and you will be fine. Your hair will fall out, maybe you will vomit from the chemo, but within a few months this will all be over.” But as we sat in the room with the doctor I was hearing a different message. “Your cancer is inoperable. It has spread to your skin, lungs, bones, and liver. We will be starting hormone therapy before you leave to prolong your life and slow down the progression but this is a non-curable diagnosis.”

Wait…WHAT? How could this be? What happened to the mastectomy? This is not what is supposed to happen!

Within 2 weeks, my mom was in the hospital trying to breathe through a passage way in her lungs the width of a drinking straw. The cancer had accelerated and it was closing her lungs...FAST. The pulmonologist gave her 3 days to live. To the rescue came a new team of doctors, and other amazing caregivers which allowed my mom to fight back. She fought for 11 months! And I am proud to say we did it together. My mom died, in the home we shared, while holding my hand on November 6, 2012 shortly after turning 60 years old.

As a caregiver, you battle this disease alongside of your loved one. While you may not be fighting for your own life, you are fighting for the life of your loved one. A caregiver’s battle is fought emotionally, mentally, and at times physically. Taking care of my mom was the hardest thing I have ever done yet I would do it for the rest of my life if I had the opportunity. What makes being a caregiver so difficult is the helplessness you feel when no matter what you do or say, you cannot take their pain away. All you can do is love. Love in the way you would want to be loved. Love for the sake of love alone.

Although my mom’s battle ended, my battle as her daughter and caregiver continues. The pain from cancer is still ever present. Every day I am fighting that same mental and emotional battle as I did when my mom was here. It just looks a little different now.  Since my mom’s passing, I have found a new approach to care giving. Again, all you need to do as a caregiver is to show a little love, take a little time. To be a caregiver, you just need to devote a little time and effort to ease the burden and better the life of your loved one in any way you can.  In order for me to be able to do this, I have taken the wisdom of the oyster.

Let me share with you for one moment the story of the oyster. An oyster is tender and vulnerable. Without its shell, it would not survive. But oysters must open their shell in order to breathe. Sometimes when they do this, a grain of sand enters which can become very painful. To cope with the pain, the oyster then covers the grain of sand slowly and patiently with layers of a thin translucent substance. The oyster then replaces its pain with something magnificent, a pearl. I have taken the pain that cancer has introduced into my life and began Project Chemo Crochet, my very own mother of pearl.

Project Chemo Crochet is an initiative that sends gifts of hope and light during the darkest of days in the form of a blanket. People from all over the world, crochet or knit 9 inch squares that are then stitched together to make “chemo blankets”.  These blankets are shipped to individuals all over the country who are currently battling cancer. But it is more than a blanket that I am shipping. To the person receiving the blanket, it is a symbol of love. Men, women, and children, from around the world have taken their time and energy to stitch a square filled with love and positive thoughts. Their squares are then stitched together to form the blanket. It is quite an emotional experience to receive a blanket. I have been told that when using the blanket, you can feel our arms wrapping you with the love and strength that went into every stitch. That my friends, is what care giving is all about. When I think about what Project Chemo Crochet does for me and others, how could I not characterize myself as a caregiver? However big or small, one gesture of love can go a long way.

Tonight we all stand here symbolically as squares shaped in our own pattern. Like Project Chemo Crochet, us squares are stitched together by a common thread. The thread that binds us together is the hope that one day there will be a cure. We are here as survivors and caregivers who support one another through this journey. We are here, united as a blanket of strength, support, and love for those battling cancer, beat cancer, and our loved ones we have lost to cancer. A quote from Helen Keller reads, “The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.” If this is what is means to be a caregiver, that I will gladly take the title and honor it as I honor my mother, forever.

Thank you.

 

 

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