Cancer for the Caregivers
Most patients have some kind of support system, large or small, to help them get through their cancer treatment. These caregivers are like the steel beams that keep a building upright. You don’t always see them or think of them, but they are an integral part of keeping the day-to-day going for a cancer patient during a very challenging time.
MaryEllen Boyle was blessed with a lot of those steel beams. Her husband of 61 years, Bill, and their five children all contributed in some way to help MaryEllen through her treatment for ovarian cancer. Like patients, though, caregivers are not all the same and they can need and provide different things for the person they are caring for.
Bill Boyle and his daughter Kathy Lusher are a textbook example of this. When MaryEllen was diagnosed with cancer, they experienced that very differently. Bill says, “I didn’t even know how to look up the words. The doctors were talking way above my head.”
Kathy, trained as an RN, was working as a medical case manager in a local hospital. When a doctor in the hospital MaryEllen was at referred to a “caking of the omentum” seen on her mother’s scans, Kathy had an inkling of what that meant and knew it was not good. As a medical professional, her knowledge and needs were different than her father’s. Kathy said, “When your medical vocabulary is limited, it can feel like the doctor is just speaking sounds, not words.”
On the day of that diagnosis, Dr. Srilata Gundala of Hope & Healing Care Centers in Hinsdale and Lombard, walked into MaryEllen’s hospital room to confirm the news. Kathy remembers, “Dr. Gundala walked right over to my Mom and introduced herself and spoke to her directly.” That Dr. Gundala kept the focus on her mother really struck Kathy. “The gift that Dr. Gundala gave to Mom was the gift of peace and trust. She became our divine presence. As she left Mom’s room that first time, my Mom offered her hand up and said, ‘Namaste.’ I didn’t even know Mom knew what that meant!”
Bill Boyle was grateful that Dr. Gundala used words he could understand. “Google is a data dump. A professional should understand that they are talking at a higher level than many of their patients. With Dr. Gundala, it felt like what was supposed to happen. There was trust both ways, no false expectations, and she was always truthful and honest.”
Dr. Srilata Gundala knows that when she is caring for a patient, she is, by extension, also caring for that patient’s family. “When meeting a new patient, I always make it a priority to understand what is important to them, including their family. These are the people that will help me care for that patient, but also the people who may be worried and overwhelmed after learning their mother, father, husband, or wife has cancer. The patient does best when we all work together.”
Working together is what Kathy remembered happened with her family during her mother’s treatment. “We all talked about it as a family. The when, where, what of treatment and options needed to be understood. Dr. Gundala relayed facts and we helped her understand that quality of life and being able to stay at home was most important for Mom. She was able to make all her own decisions and never felt pressured.” The whole Boyle family was involved in the treatment plan, including MaryEllen’s transition to hospice.
As both a caregiver and healthcare professional, Kathy has thought a lot about the experience she had caring for her mother during her cancer treatment. Knowing the personal and professional sides of the experience, she offered some tips for caregivers who may not have the same medical background she has:
Have the doctor repeat the information they are giving you until it is understood and processed;
Always bring paper, a pen, your calendar, and medication list;
Make sure you have established trust with the doctor and know that the trust goes both ways – just as you need to trust the doctor, the doctor needs to trust that you are capable of providing care at home;
A lot can be accomplished at the clinic, preventing a hospital stay or visit;
Small things can bring you and the person you are caring for pleasure and pleasure and joy are important at this time;
Keep your focus on quality of life; and
Always ask for help.
While Bill and Kathy had different experiences during MaryEllen’s treatment, they both agree that the trust and comfort they felt with Dr. Gundala provided them with a welcome sense of security and reassurance.
It is a different thing to care for a wife than a mother, and it is a different thing to be a caregiver when you have a medical background, but developing a trusting relationship with the doctor caring for your loved one is key. When Bill says, “I trusted Dr. Gundala and her knowledge completely,” his daughter Kathy chimed in readily, “I would recommend Dr. Gundala for anybody and everybody.”
Written By: Sheila Quirke, MSW
Reviewed By: Srilata Gundala, MD
