What You Need to Know as a Cancer Caregiver

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Communication

Good communication allows you to express yourself, help others understand your limits and needs, and understand the limits and needs of the person with cancer. You will need to be able to talk to the patient, the medical team, friends, family, and even people you 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.

A few tips to help you communicate clearly:

  • Respect your own feelings, needs, and desires, as well as those of the patient.
  • Speak up for your feelings while being sensitive to those of others.
  • Try to use “I” statements rather than “you” statements. For instance, say, “I need a break” instead of “You never help me!” Beware of statements like, “I feel you ignored me,” which says to the other person that he or she 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.

How do I talk to the patient?

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

  • “This is a scary time for both of us, but I want to be here for you to help you get through this. You are not alone.”
  • “I will do whatever I can to help you through this. I might do the wrong thing sometimes, or not know what to do, but I will do my best.”
  • “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 openness and sharing right from the start. Remind each other that you’re “on the same team.” Share your fears and worries. Sometimes it may be hard and you’ll disagree and maybe even fight, but openness will allow you to deal with the conflict. It will also help you to keep supporting each other and reduce distress and anxiety. Acceptance and sharing will help keep your relationship strong.

You can learn more about how to talk with the person with cancer in our document called Listen With Your Heart.

How do I talk with the medical team?

First, get the patient’s consent.

The caregiver is often the link between the patient and the medical team. In general, the medical team can share information with you anytime you are with the patient. But there are laws that protect private health information. These laws affect what medical information your loved one’s health care team can talk to you about when the patient is not present. Still, there are ways you can get information on behalf of the person with cancer. The simplest and most common way is for the patient to fill out a release form that allows the doctor to discuss their care with you.

Talk to the doctor about what steps need to be taken so that the health care team can discuss the patient’s care with you. Then be sure that there’s a copy in the patient’s records and keep the release form up to date. It’s also a good idea to keep a back-up copy for your files. When you call the doctor’s office, you may need to remind them that they have the form and they can discuss the patient’s care with you.

If you don’t have a form like this 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 not asking for information, you are giving it. Even without the patient’s consent, you can try asking for general information about problems the patient has; for example, “Is vomiting one of the side effects of the chemotherapy that Joe got this week?” Or you can ask for hypothetical advice; for instance, “If Joe has been vomiting for 2 days, should we come in to see you?” Even though you may not get details of Joe’s care, you may be able to get some help in deciding what to do next.

Keep in mind that there are different forms that are signed for different purposes. Here we are talking about a release form that allows the doctor to share medical information with you. This type of release does not give you permission to make decisions about the patient’s care. If you want to learn more about decision-making consent or other forms that may influence treatment decisions, please see our document called 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 may get information from many of these people, but it’s a good idea to pick one doctor to be the one you go to with questions. Most people choose the doctor they see most often. In choosing the doctor as your main contact, some things you may want to ask are:

  • Will you be the one to coordinate care?
  • Will you keep the other doctors updated on what’s going on?

The person with cancer should feel at ease with the doctor, and you should too. But sometimes, it takes a little time and work before this happens. Take the time to ask your questions and make your concerns known. The doctor should also make the time to answer your questions and listen to your concerns. If you, the patient, and the doctor feel the same way about sharing information and making choices, you will probably have a good relationship and you can get what you need.

If you want more information on talking with the health care team, please see our documents called Health Professionals Associated With Cancer Care and Talking With Your Doctor.

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.

Should I go to the doctor with the patient?

Going to the doctor with the patient is a good way to learn more about his or her medical condition. This can be very helpful when caring for the patient later on. It can also help the patient who forgets to mention problems to the doctor and comes home without the information you need. And finally, if you need a referral, 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 use time with the doctor well?

The average doctor’s appointment is about 10 or 15 minutes or even less, so it helps to be ready for each visit. Work with the patient before you go to figure out the most important things you need to talk about. Make a list of questions and concerns. For instance, what symptoms do you need to tell the cancer team about? When did they start? Making a list ahead of time to take with you will help you to use your time in the office well. And it means you won’t forget anything important.

Don’t leave the office until the doctor answers all your questions and you both understand what to do next. 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 is said to you. This will help you keep track of what you should remember. If you are getting back test results, be sure you understand the results before you leave. If blood work or other tests were done, find out when and how you will get the results. Also, ask who will tell you what the results mean.

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

What should I know about new medicines?

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

  • How and when should the medicine be taken?
  • What is the dose?
  • Should it be taken with food or water?
  • Are there side effects? (Like sleepiness, nausea, or dry mouth?)
  • How will you know if it is 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 this medicine to the list of all the medicines the patient is taking. (See the section called “Staying organized.”)

How can family meetings help?

Today’s families are very busy, and it can be hard to keep everyone up to date on what is 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 may not know that their help and ideas are needed, or how best to help.

One way to keep everyone informed is to have a family meeting with the health care team. When planning a family meeting, it’s important to include everyone who is or will be part of the home caregiving team. This may include a family friend, neighbor, or paid caregiver – and don’t forget the patient! If it’s hard to get everyone together, a conference call or speaker phone might help solve the problem. Some of the things that may be covered are:

  • The latest report from the doctor
  • How are things going?
  • What can we expect to happen next?
  • Sharing of feelings and concerns
  • What does the person with cancer want and need?
  • How much time does each family member have to help out or visit?
  • Other ways each person can help. What other help might be available?
  • Financial concerns about caregiving:
  • How much will it cost?
  • How much work can family members afford to miss?
  • Is other financial help available?
  • What sort of support does the main caregiver need?
  • A break from caregiving from time to time
  • Help with meals, shopping, cleaning, laundry, yard work, childcare, etc.
  • Emotional support by phone or email
  • Help with medical care, like taking the patient for treatment or to doctor’s appointments
  • 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

Every family has a history. This history affects each person’s role within the family, how members relate to each other, how they feel toward the person with cancer, and how they deal with illness. There are unspoken rules about what can be expressed and what emotions are OK. It may be hard to hold family meetings if the patient’s condition requires the group to discuss these taboo topics. If you think this will be a problem, you might want to think of ways to defuse the situation beforehand. Sometimes a wise family member can help you. Or you may want to talk with a social worker or other professional about how to bring up delicate subjects.

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


Last Medical Review: 02/14/2012
Last Revised: 03/23/2012