A Guide for Colon Cancer Caregivers

This piece was last updated on 5/17/24 to reflect current information and statistics.

Colon Cancer Awareness Month often brings new and helpful resources for patients and their physicians. However, let’s not forget the caregivers who often sacrifice much in their personal lives to support loved ones in their fight against colon cancer.

As a Caregiver, You Deserve Resources

Who is a caregiver? Caregivers often wear so many hats that it is hard to define their important role in the lives of patients. Patients may have more than one caregiver as well.

Some of the critical responsibilities of a caregiver can include:

Ensuring the patient keeps up with eating, resting, bathing, and taking medications in a routine way
Keeping track of various appointments, treatments, and procedures
Recording any questions that arise in advance of appointments that the patient will want to ask their physician
Helping with household chores, errands, and projects
Providing emotional and spiritual support to the patient

Caring for a patient in both physical and emotional ways can be very draining on new colon cancer caregivers. There are some things you should know about the new role you are taking on.

Listen and Learn

At the core of being a caregiver in any capacity is supporting the patient. As their go-to person, you’ll need to listen to how they would like to receive care. Maybe they are very emotional and receive care best through open discussions. On the other hand, they may be leaning on you for a distraction, for you to be someone that keeps daily life feeling as it did prior to a colon cancer diagnosis. Often, a patient’s needs will fluctuate between these and other mindsets—so the key is to pay attention and anticipate their needs.

Listening and learning should also be applied to learning about the disease itself. Act as a second set of eyes and ears at all appointments, taking note of the diagnosis and treatment details, plus any words of advice from physicians. Be prepared with questions, but don’t overtake appointments. Always allow the patient to be their own advocate first unless they have explicitly agreed that you should lead discussions.

Set Rules

After a diagnosis, a patient may feel overwhelmed and look for your support in establishing their new routine.

Work together and set some ground rules for the patient, yourself, and other loved ones:

Do we have all the information we need to begin making care decisions? If not, start planning next steps to get what you need.
Who will help the patient and in what capacities? Be specific, realistic, and timely. It may not seem important to establish if one person will do the patient’s laundry each Thursday, but it can save added stress later.
Who will be the point person to keep everyone updated? Everyone else should know how to contact the point-person and when the point-person may be unavailable for their own personal lives.
Have we taken advantage of all provided resources? If a physician has referred the patient or loved ones to a support group, take advantage of it. If a nurse navigator or similar guide also offered their services, get in contact.
What are the expectations for appointments moving forward? Gather all necessary records in one place. Determine if the patient wants others’ involvement in their care decisions.

In addition to establishing these with the care team, set rules for yourself. Begin by asking yourself some difficult questions:

What are your boundaries?
Do you have role clarity?
Who will be your own go-to person? Is there another loved one to support you, or is can you hire someone to take on any extraneous household tasks?
… And Then Break Them

Contradictory to the rule-setting, it is important to understand that ultimately, managing cancer is a very fluid and emotional situation. Furthermore, while the patient and caregivers should have some form of normalcy and routine, you should never feel guilty for deciding to break your own rules once or twice for the good of everyone’s mental health.

Don’t Forget to Care for Yourself

Colon cancer caregivers often battle “caregiver burden”, or the unmet physical, emotional, social, and financial needs of a caregiver sacrificed by providing care. Most commonly, caregiver burden manifests in psychological struggles—anxiety, depression, worry, or loneliness.

No one can be a caregiver 24/7 without pausing to meet their own needs. Some ways to lessen or relieve caregiver burden can include: