Communicating as a Caregiver

Communicating With the Patient

You and your loved one will need to be open and honest with each other from the start. Remember that you are both on the same team and hope for the best outcome. At some point, you will likely have disagreements and maybe even fight, but making it a priority to keep the lines of communication open and setting boundaries and expectations early on will make things easier.

If you’re not sure what to say to someone who has cancer, you are not alone. Sometimes the simplest expressions of concern are the most meaningful. And, sometimes, just listening is the best thing you can do. Make sure you speak from the heart. For instance, you might say something like

• “I don’t know what to say, but I want you to know I care.”
• “I’m here for you when and if you need me.”
• “Let me know how I can help.”

Some things to keep in mind

• While it’s usually a good idea to be encouraging, it’s also important not to tell people with cancer to “always stay positive.” This may seem to discount your loved one’s legitimate fears, concerns or sad feelings.
• Be careful when bringing up a cancer patient’s physical appearance. You may want to tell your loved one that he or she looks great, but it may not come across as the compliment that you intended. For example, weight loss for cancer patients is often a side effect of cancer and treatment, so a compliment on weight loss may come across as insensitive.
• It may not be a good idea to share stories about family members or friends who have had cancer. Every person is different, and these stories may not help, especially if the friend or family member has passed away.
• Laughter can be a great way to relieve stress. If your loved one makes a joke about the situation, you can laugh with them. However, you never want to joke unless you know the person with cancer can handle it and will appreciate the humor.
• Respect your loved one’s privacy. Some patients prefer to keep their diagnosis private, especially in the beginning.
• Be aware of cognitive issues. Cancer patients sometimes experience cognitive issues, often referred to as “chemo brain,” as a side effect of treatment. Your loved one may become forgetful, have trouble concentrating or seem confused at times. Be patient and understanding 

See Worksheet 4: Questions for Caregivers to Ask Their Loved Ones

Relationship Changes

Managing a relationship with a patient may be one of the more unexpected challenges of caregiving. Your relationship with your loved one may change as you transition into your new roles as caregiver and patient, changing your day-to-day life and the dynamics of your relationship.

• Caring for Your Spouse or Significant Other. You and your spouse likely view your relationship as an equal partnership, but a cancer diagnosis may change that dynamic. Cancer can also make intimacy a challenge.
• Caring for a Parent. When you are caring for a parent, the role reversal may feel odd at first. For most of your life, your parent may have filled the caregiver role in your relationship. Your parent may be reluctant to accept care and not want to be a burden.
• Caring for an Adult Child. If you are a parent caring for an adult child who has a cancer diagnosis, remember that the patient is an adult. You must respect his or her decisions regarding treatment. Providing care for your child may feel natural for you, but if your son or daughter had been living independently prior to the diagnosis, being dependent on the care of a parent again may feel frustrating and infantilizing.
• Caring for a Child. When caring for a child with cancer, your relationships with others may be strained, especially with your co-parent. You may not always agree on what is best for your child. You may feel at times as if your co-parent isn’t taking on a fair share of the added workload involved in taking care of a sick child. If you have more than one child, siblings may feel left out, confused by, or resentful of the attention that the child with cancer receives from you and others.

Read the PDF Communicating as a Caregiver for more on these topics.

Telling Children About a Loved One’s Diagnosis

Talking to children about the cancer diagnosis of someone they love can be intimidating. You may worry about what to say or what not to say. You may even wish to protect children by not telling them about the cancer diagnosis; however, children are very perceptive. Even young children may be able to tell that something is wrong. Children will use their imagination and fill in the gaps of information.

Read the PDF Communicating as a Caregiver for guidance on making a plan to talk to the child, including charts with age-appropriate information.

Communicating With Members of the Healthcare Team

The following tips will help you to better communicate with members of the healthcare team during your loved one’s appointments:

• Write down your questions. Number your concerns in order of importance, asking the most important questions first. Let the doctor know you have a list so that he or she can set some time aside during the appointment to respond to your questions.
• Take notes. Write down the doctor’s answers to your questions. Write down any other important information that you or your loved one needs to remember. Notes can include the names of the members of the healthcare team, dates and times of future appointments, and when and how your loved one should be taking prescribed medicines. You can also ask the doctor if you can record the conversation so you can listen to it again later.
• Ask for written information about the patient’s diagnosis, treatment plan and lab results. Keep everything in one place. This way, nothing gets lost, and you always know where to find the information.
  • Share this information with all the healthcare professionals your loved one sees for any health reason, and encourage the healthcare professionals to talk with each other to ensure the most comprehensive care.
• Ask for written information about any side effects or symptoms and ask how you will know if you will need to contact the doctor about them immediately or if you should go directly to the emergency room.
• Encourage your loved one to tell the doctor about any symptoms or side effects.
• Ask the doctor to slow down or explain things in another way if you or your loved one is having trouble either following or understanding information the doctor is giving you.
• Ask if the team will designate a team member as your main contact person. He or she will then be the best person for you and/or your loved one to approach with your concerns and the important questions that will probably come up between appointments. How should this person be contacted? Find out how to communicate with this person through phone, email or an online patient portal offered by the hospital or treatment center.
• Make sure you know who to contact in an after-hours or an emergency situation when you need immediate assistance. Ask what signs or symptoms require a trip to the emergency room.
• Ask where you can find credible information online or printed resources pertaining to your loved one’s diagnosis or other needs.

Worksheets: Use the following worksheets to keep track of appointments and prepare for meeting with members of the healthcare team:

• Worksheet 6a: Appointment Calendar, by Month
• Worksheet 6b: Appointment Calendar, by Week
• Worksheet 6c: Appointment Details
• Worksheet 7: Questions for the Healthcare Team

Long-Distance Caregiving

Family members often live in different cities and states. As a result, some caregivers must help their loved ones from afar. This task can be difficult, stressful and time consuming. To sustain long-distance care over a period of time, you need to be sensitive to your own needs, as well as to those of your loved one.

Tips to Make Long-Distance Caregiving Manageable

• Be organized. Keep the patient’s medical records, healthcare team contact information, insurance, advance directive or other legal paperwork in one place. You will need to reference this paperwork often, so it helps if it is all easily available. If you do not have access to this information, the patient will have to sign a waiver at the treatment center to allow you access.
• Get to know members of the healthcare team. Call or email each member of the healthcare team and introduce yourself. Then, as soon as you can, accompany your loved one to some appointments at the beginning of his or her treatment. This will give you a chance to actually meet each member of the healthcare team. Remember to collect all their appropriate contact information, too. Your loved one will have to give permission to the hospital or treatment center to allow you to discuss diagnosis and treatment information with members of the healthcare team.
• Update emergency contact information with the hospital or treatment center. Make sure that you are listed as the emergency contact person for your loved one and that you have supplied accurate and appropriate contact information.
• Travel the right way. When you are going to visit your loved one, make a plan to accomplish everything that needs to be done. Having a plan keeps you focused and less stressed.
• Build a long-distance support system. As a long-distance caregiver, you should establish support systems for both your loved one and yourself. If family members are available but live too far away to provide hands-on support, they may be able to help with financial or legal matters that can be managed by phone or mail. Neighbors and friends in your loved one’s community may be willing to provide transportation or help with shopping, household chores and other tasks. Communities have various resources and services to help you care for your loved one if you do not live nearby.
• Use a caregiver app to coordinate care. A caregiver mobile or web-based app helps you coordinate aspects of your loved one’s care by organizing friends and family who want to help. Use these apps to plan meal deliveries, set up rides to treatment, ask for volunteers for chores and give updates on your loved one.
• Set up an emergency plan. If your loved one has an accident or there is some other emergency situation, you’ll want to get to him or her as soon as possible. If you have an emergency plan in place, you’ll have more time to make clear-headed decisions about your work and home arrangements, as well as the time to think through any decisions you may have to make regarding your loved one. That means less stress, less wasted time and fewer mistakes.
• Explore home health services. Home health services for your loved one may become necessary as treatment progresses and if your loved one is less able to care for himself or herself. State or local health departments usually have a list of licensed home care agencies, and your healthcare team can suggest those they trust.

Read the PDF Communicating as a Caregiverfor things to consider before taking on a long-distance caregiving role, and for more tips.