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By: Alicia Remy, MSW, LICSW, and Nancy Tharler, MSW, LICSW

We identify cancer as a “family” illness. In 2015, the National Alliance for Caregiving and AARP approximated “43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months” (Family Caregiver Alliance, 2016). Patient and caregiver experiences are inextricably linked; the physical and mental health of both can be positively or negatively affected by access to pertinent resources. 

If a caregiver feels well supported, their enhanced coping skills will ultimately benefit the patient’s well-being. There has been insufficient attention and awareness to the pivotal role of caregivers, which poses a risk for resource underutilization.

What you may be feeling as a caregiver can depend on where your loved one is in their journey, how frequently you travel to and how far away is the clinic, and what the future looks like. Although it can be quite rewarding to be a caregiver and bring people closer together, it can also bring about other very normal feelings, as well as some you may not want to share.

Tips to help you as a caregiver:

  • Re-prioritize and think about what may be most important going through this process, and talk about values and goals with your loved one. 

  • Be as open and honest in communication as possible, even though it can be difficult. If it’s helpful, set family meeting times occasionally or engage with a social worker to help navigate conversations. The Alliance’s patient and family support team can help you for free. Just call (877) 422-2030 or attend a chat.

  • It’s okay to ask for help and designating tasks. Family and friends may be looking for “something helpful to do,” and they could help with driving, looking after kids and elders, preparing meals, and donating towards a Go Fund Me page. 

  • Check out www.caringbridge.org and www.Lotsahelpinghands.com for tools to help you organize care.

  • Organize in a way that makes sense for you. Buy a notebook or binder where you keep all medical information and handouts, in addition to having a written or digital calendar to keep track of appointments.

  • Find support and talk to someone about how you are doing. The Colorectal Cancer Alliance manages the private Facebook community Blue Hope Nation, but other support groups are available through the American Cancer Society and CancerCare, as well as social workers, psychologists, and faith/spiritual leaders.

  • Don’t forget about yourself.  No matter what, you will be 10 times more effective as a caregiver if you carve out time to care for yourself. Find something at least once a week just for yourself—see friends, read, listen to music or go for a walk. Follow up with your primary care physician and take your regular medications.

  • Check the AMA Caregiver Self-Assessment Questionnaire online if you need a tool for self-assessment. 


Alicia Remy, MSW, LICSW, and Nancy Tharler, MSW, LICSW were speakers at AllyCon 2019, the Colorectal Cancer Alliance’s national conference. 


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