Head & Neck

The Role of a Caregiver

A cancer diagnosis and/or cancer treatment can affect your loved one’s mental focus, memory, thinking skills, emotional stability and stress level — all of which can significantly impair communication skills. Physical limitations may also affect the ability to communicate clearly.

As a result, building strong lines of communication with the health care team may fall to you. Keeping those lines open with accurate information flowing both ways will become a crucial part of your caregiving role. You’ll be essential in encouraging, deciphering and relaying communication throughout diagnosis, treatment and survivorship.

This responsibility may seem overwhelming at first, particularly given that head and neck cancer treatment often involves a large multidisciplinary team. The following suggestions may help make this important task easier.

Find out who is on the health care team and their preferred contact method. If a contact list isn’t available, make one by noting the name, contact information and role of each person. Ask for a business card, and if a telephone call, text or email is the best way to reach them. Also inquire about the best time of day to reach them. Let everyone know you will be in touch regularly to relay questions and discuss progress and other concerns. Make sure paperwork has been signed authorizing each doctor’s office to share health information with you. Ask your loved one to sign forms giving you access to the electronic patient record the health team uses so you can see appointments, request prescription renewals, send questions to various members of the team as needed and view test results.

Start a logbook noting the date, name and details of each interaction, including phone calls. This will document what was said, when and by whom; what actions were agreed upon or promised; and any issues that were or weren’t resolved or need follow-up. Always keep this log and a pen nearby. It will become an important reference and can also be shared whenever family members have questions.

Consider bringing someone along to appointments to take notes. If you are the spouse or adult child, you may have trouble processing cancer information about your loved one, especially at first. It can be helpful to have someone else handle note-taking responsibilities. If you cannot attend an appointment, request to be included by speakerphone. Most doctors allow the patient or family member to record the consultative visit, so inquire about this option, too. (When under stress, we may only retain a small percentage of what was told to us. Being able to listen to a recording later is far better than guessing.)

Relaying symptoms and side effects will be important during treatment. It is often difficult for people undergoing cancer treatment to accurately remember and describe symptoms to their doctors. Track symptoms at home with detailed notes to take to appointments along with a running list of questions. Speak up to help clarify details about the frequency, intensity and duration of side effects. Before treatment begins, find out what symptoms should warrant a call to the doctor, a visit to urgent care or emergency medical attention.

Introduce yourself to the patient navigator, case manager, social worker and oncology nurse(s). Meet individually with each of these essential team members as soon as possible. They are experienced in coordinating care between multiple doctors and can connect you with resources at your cancer treatment facility and in the community. Make them your primary contacts for help, insight and guidance in navigating through the health care system. It will be very important to know their availability and the best way to communicate with them. They usually are not listed as providers within an electronic patient record, so you may be communicating via email, phone, voice mail or text.

Find online support groups and resources to help you. Taking on the role of a caregiver can be challenging, but you don’t have to do it alone. There are resources to help, such as HNC Living Foundation (hncliving.org) and KEY+YOU (keyplusyou.com).

Remember, your dedicated efforts can make a big difference in your loved one’s outcome and overall cancer experience.

 

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