This is the final post in a two-part series on creating a toolkit for caregivers.
By Tricia Strusowski, MS, RN
A recent symposium on Palliative Care in Oncology also called attention to the importance of ensuring that the needs of cancer patients’ caregivers are recognized. “Despite providing essential home and healthcare services, cancer caregivers are underserved and undervalued while facing a multitude of unmet needs,” said J. Nicholas Dionne-Odom, PhD, RN, ACHPN, of the University of Alabama at Birmingham School of Nursing. “There are 2.8 million cancer caregivers performing a variety of invaluable and time-consuming tasks that can take a marked toll on their physical and mental health.”1 Caregivers are tasked with daily activities in the home and at work, potentially child/elder care, appointments, transportation, medication administration, meals, and medical procedures needed by the patient just to name a few. We need to ensure that we are discussing the needs of the caregiver, as well as those of the patient, on a routine basis.
As navigators, we can provide education information for caregivers, support groups, or educational programs. Make the caregiver a high priority in your navigation program.
Here are 24 practical tips that patient navigators can share with caregivers to help them through the process.
- Give yourself and your loved one time to adjust to the diagnosis.
- A positive attitude is beneficial for you and your loved one.
- Giving care to a loved one with cancer requires patience, flexibility, courage and a good sense of humor.
- Good communication is essential to learning how to best work with your loved one.
- Plan special times together away from the routine of treatment, such as a special evening out for dinner, a movie or play, etc.
- Talk about the future. Hope is very important.
- Being a caregiver can reveal hidden strengths and enrich your family life.
- As a caregiver, you can choose to take the primary caregiver role or, depending on the level of support from family and friends, divide it between two or more persons.
- Being a caregiver can affect you emotionally, physically, and financially. For guidance, speak with your cancer program’s social worker.
- To better understand your loved one’s diagnosis, treatment and progress, be an active participant during clinic visits.
- Stay organized (e.g., use a journal or notebook during your loved one’s appointments).
- Encourage your loved one to engage as much as possible in normal daily activities.
- Give yourself permission to feel emotions about your loved one’s situation, and confide in a friend or counselor who can provide insight and support.
- Set up a list of activities that your family or friends can sign up to do weekly or monthly.
- To help reduce your stress, make time for regular exercise, meditation, or some other form of relaxation.
- If care is long-term, arrange for extended periods of relief (e.g., take a vacation).
- Attempt to maintain as much of your routine as possible, but recognize that you may need to alter some of your daily activities if you are the primary caregiver.
- Take advantage of caregiver support groups and credible websites for resources and support.
- Taking care of YOU is important too. Get adequate rest and nutrition, and take time for personal care.
- Select funny movies to watch together. Good humor is healthy for the body and soul.
- Allow yourself private time to do nothing, or something important to you.
- Spiritual support through prayer or the guidance of a spiritual leader can be good medicine.
- Designate a family member or friend who can help field phone calls regarding your loved one’s progress.
- If you have children in the home, assign them age-appropriate tasks to accommodate the necessary changes in the household routines.
1 Doyle C. Palliative care for caregivers: Implementing caregiver support programs. Oncol Pharm. November 2016;(9)6. Available online at http://theoncologypharmacist.com/ton-issue-archive/2016-issues/november-vol-9-no-6/16928-palliative-care-for-caregivers-implementing-
ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.