How to Communicate as a Caregiver

A caregiver needs to be able to talk to the patient, the medical team, friends, family, and even people they barely know who are concerned about the patient. This can be hard to do. And when you need information from the medical team, it may not be possible to get it without signed permission from the patient.

How do I talk to the patient?

Let the patient know you want to be there for them and need to be included in their care. Try something like:

• I’ll do whatever I can to help you through this. I might not know what to do sometimes, but I’ll find out and do my best.
• I want to be here for you to help you get through this. You’re not alone.
• We can do this together. Let’s try to be open with each other and work with each other no matter what happens.

It’s good to set a goal of sharing and being open right from the start. Remind each other that you’re on the same team. Share your fears and worries. Be honest. It will also help you keep supporting each other and reduce distress and anxiety. Acceptance and sharing will help keep your relationship strong.

A few tips to help you communicate more clearly:

• Respect your own feelings, needs, and desires, as well as those of the patient.
• Speak out about your feelings while being thoughtful about others’ feelings .
• Try to use “I” statements rather than “you” statements. For example, say, “I need some help” instead of “You never help me!” Beware of statements such as, “You ignored me,” which says to the other person that they did something wrong. Instead, try “I didn’t hear you answer when I mentioned ______,” or “I need help with this problem.”
• Focus on the present rather than bringing up old patterns or hurts.

You might find that the person you’re caring for is acting different – angry, quiet and withdrawn, or just sad. If you think they aren’t talking to you because they don’t want to hurt your feelings, make sure they know that you are always open to listening, even about tough topics. If they keep acting very sad or withdrawn, you might want to talk to the cancer care team about what could be causing it and what can be done. Learn more in Emotional, Mental Health, and Mood Changes.

• Remember that people communicate in different ways. Try sharing by writing or by using motions, expressions, or touch. Sometimes, it may be really hard to say what you’re feeling, but an act such as holding hands might show how you feel.
• Take hints from the person with cancer. Some people are very private while others will talk more about what they’re going through. Respect the person’s need to share or his need to remain quiet.
• Be realistic and flexible about what you hope to talk about and agree on. You may need or want to talk, only to find that the patient doesn’t want to do it at that time.
• Respect the need to be alone. Sometimes, we all need time alone – even you.

How do I talk with the medical team?

First, get the patient’s consent

If a release form hasn’t been completed yet, you probably won’t be able to get certain kinds of information. But you can still share information with the doctor. You can tell the office staff that you are giving information, not asking for it. It will be hard to get information without the patient’s consent, so it is important to have the patient’s consent even for general information such as the sideeffects from chemotherapy. This information may be helpful in deciding what to do next.

Keep in mind that different forms are signed for different purposes. Here we are talking about a release form that only allows the doctor to share medical information with you. Doctor’s offices may call this a “HIPAA form.” This type of release does not give you permission to make decisions about the patient’s care.

If you want to learn more about informed consent, decision-making, or other forms that may affect treatment decisions, see Informed Consent and Advance Directives.

Which doctor do I talk to?

Cancer treatment often involves more than one doctor. There may even be a team of doctors, nurses, and other people taking care of your loved one. You’ll need to ask which members of the cancer care team to contact for questions. After you find out which cancer care team members are your main contacts, it would be helpful to plug them into your phone contacts.

The person with cancer should feel comfortable talking with the cancer care team, and you should too. Take the time to ask questions and make your concerns known to them.

If you want to know more about who might be on the health care team and how to talk with them, see Health Professionals Associated With Cancer Care and The Doctor Patient Relationship.

Most health experts who work in the field of cancer do so because they care about the needs of people with cancer. When you look back on this experience, some of your strongest memories may be of those health care providers who were with you through a really hard time.

Do I need to go to doctor visits with the patient?

Going to see the doctor with the patient is a good way to learn more about their medical condition. This can be very helpful when caring for the patient later on. It can also help the patient remember to mention problems to the doctor and/or to come home with the information you need. And finally, if a referral is needed, maybe for a specialist, social worker, or medical supplier, you may be able to get the names of people who can help.

How do I make the most of my time with the doctor?

The average time you have with the doctor during an appointment is about 15 to 20 minutes or even less, so it helps to be ready for each visit. Before you go, it’s a good idea to make a list of the most important things you need to talk about. For example:

• What symptoms or side effects do you need to tell the cancer team about?
• When did these start?

Making a list ahead of time to take with you will help you to use your time with the doctor in the office to cover anything important.

While you and your loved one are with the doctor or a member of the cancer care team, make sure you both understand the plan for treatment. Nurses can also be great sources of information, and you might get to spend more time with them than the doctor. Take notes on what’s said to you. This will help you keep track of what’s important to remember. If you’re getting test results back, be sure you understand them before you leave. If blood work or other tests were done, find out when and how you’ll get the results. Also, ask who will tell you what the results mean.

It’s a good idea to ask if there is an online portal so that you can check results, and send and receive messages from the cancer care team.

A voice recorder can also be a useful tool when you are being given information. Most doctors and nurses are comfortable with their patients using one, but be sure to ask before you do.

What about new medicines?

If the patient gets a prescription for a new medicine, be sure you know the name of the drug, what it’s for, and why they are getting it. Some other things you need to know are:

• How and when should the medicine be taken?
• What’s the dose?
• Should it be taken with food, water?
• Are there side effects? (Like sleepiness, nausea, or dry mouth?)
• How will you know if it’s working? How long before you can expect it to work?
• Will it interfere with any other medicines or supplements the patient is taking?
• Are there foods, vitamins, or medicines that should be avoided while taking this drug?
• What should you do if a dose is forgotten? Take another? Skip it?
• How much does it cost? Will health insurance cover it? Is there a generic substitute?

Be sure you add the new medicine to the list of all the medicines the patient is taking.

How can family meetings help?

Today’s families have different on- the- go schedules, and it can be hard to keep everyone up to date on what’s happening with the patient. Family members may feel frustrated and left out. They may not understand the medical condition, especially if the patient is having problems. They also might not know that their ideas may be helpful or how to help.

Family meetings are one way to keep everyone informed. When planning a family meeting, it’s important to include everyone who will be part of the caregiving team at home. This could include a family friend, neighbor, or paid caregiver. Remember to include the patient in the family meetings. If it’s hard to get everyone together, a conference call, virtual/online app, Facetime, or speaker phone might help solve the problem. Some of the things that may be covered are:

• The latest report from the doctor: How things are going; what to expect next.
• Sharing feelings and concerns
• What the person with cancer wants and needs.
• How much time each family member has to help out or visit.
• Ways each person can help. What other help might be available.
• Financial concerns about caregiving
• How much the caregiving plans will cost
• How much work family members can afford to miss
• Other financial help available
• Help for the main caregiver (help with meals, shopping, cleaning, laundry, yard work, childcare, etc.)
• How to get breaks from caregiving from time to time
• Emotional support for patient and caregiver by phone or email
• Who can help with medical care, like taking the patient for treatment or to doctor’s appointments
• Who can help with sharing news and updates on the patient’s condition so that the main caregiver doesn’t have to spend time repeating the news each day

If there are family issues such as how members relate to each other, how they feel toward the person with cancer, and how they deal with illness, it could cause problems in the patient’s care. It would be good to work with other family members on any issues that could get in the way of helping to care for the patient. A social worker or other professional can help with these issues.

Try to get everyone to focus on the issues at hand. You might even want to write up a list of issues or questions and have everyone look at it and add their own. This way there’s a specific agenda for the family meeting.