Caregiver Support

Thoughts From A Caregiver

Kellie Delveaux
Published in St. Vincent Compassionate Care Newsletter 2008
     Up until this year I have been blessed with the good health of my family and friends. The diagnosis of cancer was remote, not in my thoughts until July 19, 2007. I brought my close friend to the ER at St. Vincent where she was diagnosed with Stage 3B cervical cancer and the roller coaster began.
     Immediately I jumped into hyper drive because the lack of control over her prognosis, treatment and outcome was not something I could emotionally handle. I organized fund raisers, had house and yard crews set up, sent her kids to friend's houses, paid her bills and did all the petty work I could because I couldn’t face the emotional aspect of the diagnosis.
     The problem was in my zest to help and make things easier for her; I took away her control over her own life. She too was not in control of her diagnosis. I had the best intentions and she knew that, but at the same time, by not consulting her, I was contributing to the lack of control in her life.
     That has been one of the hardest lessons throughout this journey. In a way, the experiences and lessons I had with her diagnosis were going to help me with the next step of my journey as an outsider to the disease.
     In March my mother was diagnosed with a glioblastoma just as my friend’s cancer metastasized to her lungs. Double whammy!
     These diagnoses have caused a great deal of stress, learning and, strangely, growth to members who are on the fringe of the people dealing with the diagnosis. I have made friends that I probably wouldn't have made, come closer to family members unexpectedly and made an interesting emotional journey myself. The diagnosis does not just affect the patient, it slams everyone around. The best analogy is a shotgun blast. It may hit the target but there is scatter ammunition that wounds those close to the person hit.
     Both my mother and my friend are fighters in every sense of the word. These cancers picked the wrong victims. This experience has been surreal in so many ways, defining a new normal for life when it will never go back to what it was. Cancer is probably the ugliest word I know right now. In trying to complete everyday tasks, it's always right there on the edge of my thoughts.
     What can I do? If I research eight hours today will I find some obscure miracle cure? If I make sure everything in their life is done will they have more strength to fight? And then there are the dark thoughts. What if this is my last summer with my mother and my best friend? Have I done enough? Have I been a good daughter and friend? The tilt-a-whirl of thoughts is hard to quiet.
     I recently attended a conference in Chicago with my mother, put on by the American Brain Tumor Association. What probably struck me the most were the name tags they gave us. In huge letters on the first line was the diagnosis GLIOBLASTOMA and below in smaller letters, our names. She’s not a diagnosis, she’s a person and to me that has to come first.
     Plans change, perspectives change but she is still my mother. I have made great effort to not continuously ask how they are doing, what were the latest appointment results, when is the next scan? It’s not easy because so much rests on those things. Instead I have had to reframe my thinking, focusing on other things in conversation.
     To say the last year has changed my life seems insignificant. The last year has been a time of great pain and anxiety, but also great joy in expressing my love and gratitude for these two amazing women. I have also seen others grow, made new connections and have forced myself to see the joy in everyday little things previously taken for granted and for that I am grateful.
     For those who are caretakers, friends, and partners or play any other role in a person's life that has been struck with any cancer diagnosis, I have one piece of advice. Be there, support, love but remember the person with the diagnosis needs to have some semblance of control and dignity through this journey. They are not a diagnosis; they are a person who now has to fight their way on their terms.

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