The Case for Changing “Caregiver” for Cancer Patients

Prior to my receiving my first breast cancer diagnosis, when I heard the word “caregiver”, I would think of those individuals who worked in nursing homes and other similar facilities or who came to a patient’s home to provide medical or physical therapy-type services. Therefore, when I heard my husband and friends referred to as my caregivers, this title did not ring true to me. Over time, I have asked other cancer patients and those associated with the various patient communities and I have found that I am not alone. However, it seems that the problem has been in finding another term that might replace the word “caregiver” for those on whom we rely that are not part of a medical care or nursing facility or a trained professional who provides “at home” treatments and services. So, now seems as good of a time as any to start my new campaign.

I would like to provide cancer patients with a new way to acknowledge their team of helpers in our new world by referring to them as “supporters” because of the contributions that each has given to the overall cancer patient’s world that is no longer limited to just one individual being able to cover everything in a patient’s life. Barbara Jacoby

I am advocating for referring to my husband as my primary “supporter”. I believe that every family member, friend, co-worker and/or associate who provided any type of help or service to me while on my cancer journey deserves to be given the title of a cancer patient “supporter”. For many who receive assistance from another, even on the top-tier levels of help after a diagnosis, would never think of that person as a “caregiver’. My primary supporter was there for everything from taking me to doctors’ appointments and being there before and after surgeries while patiently waiting during those surgeries. He was there to drive me home, be sure that I had everything that I needed to be comfortable for sleep and gather prescriptions and other supplies that I would require as recovery started. And he was also there to make sure that all chores were done, the shopping was completed and meals were available when needed. But, at no time was he a part of my actual physical care for which I had assumed personal responsibility.

For others with whom I discussed this subject, each one was completely in agreement. While some indicated that they did need some extra assistance on occasion with personal care, the term “caregiver” was not their choice and felt that it was excluding many others on whom they had depended. It was often friends and co-workers who took patients to doctor’s appointments and made meals that were delivered to their homes. It was the mother of a child’s friend who provided transport to and from school and activities since the patient was not able to do so. It may have been a neighbor who tended to the children’s needs or did the laundry or grocery shopping. And in most cases, it was a whole team of people who provided everything else that a patient needed outside of their medical treatments.

Perhaps in the past, the terms “caregiver” or “primary caregiver” may have been appropriate when a patient’s life was mostly spent in the home and one person was responsible for the orchestration of all of the care and support that a cancer patient needed. However, with the new dynamics that reflect the modern day life and treatment of a cancer patient, it often does take a village to support a person.

Therefore, I would like to acknowledge every single person who provided me with help and support during my personal journey by acknowledging them as my “supporters” or “patient supporters”. This will include my friends and fellow survivors who listened to and allowed me to vent about what I was experiencing. It includes my fellow workers who assumed some of my duties in order to help cover my job responsibilities while I was undergoing treatment. This includes my friend who took me to and picked me up from a needle biopsy and took me out to dinner so that I could enjoy the rest of my day rather than focusing on the procedure that I had just had. And these are only a few of the people that just about any person who has had a cancer diagnosis would like to include as a “supporter” who would never be thought of as a “caregiver”.

So, I would like to officially relegate the word “caregiver” back to its original meaning to those who provide actual medical and physical care to all patients. Further, I would like to provide cancer patients with a new way to acknowledge their team of helpers in our new world by referring to them as “supporters” because of the contributions that each has given to the overall cancer patient’s world that is no longer limited to just one individual being able to cover everything in a patient’s life. And most of all, I would like to give thanks to every single one who has added to and/or changed my life since my original diagnosis. Each one of you is a supporter who has helped to change and re-frame my life forever and for that, I am eternally grateful.