Caregiver or Referee?

While Caring for the Patient, You Will Be the Official

There is one aspect of caregiving that we may not recognize or focus on but most of us are definitely qualified for: refereeing! Referees oversee the action, make sure that everyone involved in the activity is following the rules of the game, and decide when to call a penalty.

As a parent, refereeing means that we give a time-out to our kids who are fighting in the backseat of the car. As an employee or manager, refereeing is directed towards producing a quality product for the customer. As a caregiver, you have to be involved in every aspect of the care of the patient—and make sure that everything that goes on around the patient is in their best interest. No, refereeing isn’t just for sporting events.

When you’re the primary caregiver for a chronically ill patient, you’ll often find that challenges come one right after another from many different sources. Whether the opponent is a healthcare professional or even the patient himself, your job is to coordinate and control the situation at hand.

Being effective in the caregiving arena requires that you focus on several useful qualities including: foresight, knowledge, patience, persistence, intuition, and—last but not least—courage.

Foresight: Lay the groundwork. In order to be the overseer of the action, you have to be included in all the discussions and decisions that affect the care receiver. The patient needs to understand that foundation of trust and so does the medical support group—especially all of the physicians involved in primary care. Due to laws and regulations, make sure that all privacy documents indicate that you are privy to the patient’s information.

Knowledge: Know as much as you can about the patient’s illness, possible pitfalls, and general care. Referees must thoroughly understand the game they are presiding over, as they are the ones in charge of making sure all of the regulations are followed. If you hired a caregiving company, the first thing they would do is fill out a stack of forms. Information is key to effectively caring for any patient. Ask plenty of questions. Document the pertinent facts, particularly those related to medications.

Patience: You’ll need a lot. Referees must make important decisions at a moment’s notice, and at times the players and coaches are not happy with the decision. You will need to work through the frustrations of the patient and the limitations of the medical team. When I say limitations, the biggest one is the available time that the doctor has to spend with the patient, usually because of an overloaded schedule. If you feel that you’re getting the “bum’s rush,” blow the whistle until every detail is covered.

Persistence: Ask, ask, ask again. Referees communicate well with others and pay attention to details. I’m not the type of person who likes to go through things over and over again, but in some cases persistence pays off. If the doctor talks in too much medical jargon, keep asking in a different way until you get the answer that you understand. Sometimes you have to say point-blank: “Please explain that slowly and in laymen’s terms.” Unfortunately, my husband’s primary oncologist often replied to questions in a complicated way because he just didn’t know the answer. If you feel that the topic is important to your patient’s care, halt the action—don’t leave that exam room until you understand fully.

Intuition: Follow your gut. Intuition is effectively recognizing all of your natural instincts. The important ones are sight, sound, smell, and touch. Early in life, we learn to tune out many of these valuable assets. Being the referee for a patient means that you should tune back in. There will be times when they simply can’t or won’t tell you what’s going on. If you use your God-given instincts, putting together pieces of the puzzle means you’ll be aware of potential problems before they become critical—even without verbal confirmation of the issue or concern.

Courage: Sometimes you have to overrule even the patient. I’m a huge advocate of a patient’s personal choice. One of the hardest decisions that I ever had to make was to bypass my husband and go directly to the doctors when—in fact—he had metastatic brain cancer. A brain illness changes everything. While “the officials” can’t alienate their patient or make him or her feel betrayed, the decision that must be made will be in the best interest of the patient. Some days won’t be as clear as others. Sometimes they just won’t feel good, and won’t want to deal with the issues themselves. The caregiver has to make certain that all details are covered with the medical staff. One detail—one tiny detail that you may feel is insignificant—could result in a turning point where you don’t want to go.


The Saving of Gordon: Lifelines to W-I-N Against Cancer

(available at
Based on Joni’s experience and years of research, this inspirational and informative book is designed to give families a fighting chance in their own cancer battle.

Connecting through Compassion: Guidance for Family and Friends of a Brain Cancer Patient

(available at
Co-authored by an expert on brain illnesses, this book contains information that every brain cancer caregiver needs.

Would you like to send something special to someone who’s going through a health-related hardship? Instead of a plant or flowers, why not send them a Basket of Care ( These baskets are lovingly designed by a cancer survivor and chock-full of items that will lend comfort. Care baskets include such items as warm blankets, angels, slipper socks, hope messages, note cards, and books by Joni Aldrich. Or what about a “Day at the Beach” basket for a child who is ill? A Basket of Care is just the way to say, “I care.”

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