Support for Caregivers

When Someone 

You Love 

Is Being Treated

for Cancer

National Cancer Institute

U.S. Department 

of Health and

Human Services

National Institutes

of Health
For more information...

The following free booklets may be helpful if your loved one 

is receiving cancer treatment:

•	 Chemotherapy and You

•	 Coping With Advanced Cancer

•	 Eating Hints for Cancer Patients

•	 Taking Part in Cancer Treatment Research Studies

•	 Pain Control

•	 Radiation Therapy and You

•	 Taking Time

•	 Thinking About Complementary and Alternative Medicine

•	 When Cancer Returns

These booklets are available from the National Cancer 

Institute (NCI). To learn more about specific types of 

cancer or to request any of these booklets, visit NCI’s 

Web site (www.cancer.gov). You can also call NCI’s 

Cancer Information Service toll-free at 1-800-4-CANCER 

(1-800-422-6237) to speak with an information specialist.

We would like to offer our sincerest gratitude to the 

extraordinary caregivers, health professionals, and 

scientists who contributed to the development and 

review of this publication.
When Someone You Love 

Is Being Treated for Cancer

“You definitely need to learn ways to take 

care of yourself. Because if you’re not taking 

care of yourself, you can’t take care of 

anyone else. Don’t be afraid to ask questions 

and don’t be afraid to ask for help.” 

—Francis
The purpose of this book 

is to focus on you and your needs. 

We’ve heard from many caregivers about things they wish 

they had known early on. We have collected their tips in 

this booklet. Some of the tips seem simple, but they may 

not always be easy to do. 

Use this booklet in whatever way works best for 

you. You can read it from front to back. Or you can just 

refer to different sections as you need them.

No two people are alike. Some chapters of this 

booklet may apply to you, while others may not. Or 

you may find that some sections are more useful 

to you later.

Terms Used: This booklet uses the terms “loved one”

and “patient” throughout to describe the person you are 

caring for. In addition, for ease of reading, we alternate 

using the pronouns “he” and “she” when referring to the 

person with cancer.

Other booklets for caregivers that can be ordered or 

printed from the NCI Web site are: 

•	 Facing Forward: When Someone You Love Has

Completed Cancer Treatment

•	 When Someone You Love Has Advanced Cancer

•	 Young People With Cancer: A Handbook for Parents

•	 When Your Parent Has Cancer: A Guide For Teens

•	 When Your Brother or Sister Has Cancer:

A Guide for Teens
Table of Contents

Who Is a Caregiver? .......................................................................1

Adjusting to Being a Caregiver ......................................................3

Caring for Your Mind, Body, and Spirit.......................................10

Talking with the Health Care Team.............................................19

Talking with Family and Friends .................................................21

Life Planning................................................................................37

Reflection .....................................................................................40

Caregiver’s Bill of Rights ..............................................................41

Resources ......................................................................................42

1

Who Is a Caregiver?

This booklet is for you if you’re helping your loved one 

get through cancer treatment. You are a “caregiver.” You 

may not think of yourself as a caregiver. You may see what 

you’re doing as something natural—taking care of someone 

you love. 

There are different types of caregivers. Some are family 

members, while others are friends. Every situation is 

different. So there are different ways to give care. There 

isn’t one way that works best. 

Caregiving can mean helping with day-to-day activities 

such as doctor visits or preparing food. But it can also be 

long-distance, coordinating care and services for your loved one by phone or e-mail. Caregiving 

can also mean giving emotional and spiritual support. You may be helping your loved one cope 

and work through the many feelings that come up at this time. Talking, listening, and just being 

there are some of the most important things you can do.

Giving care and support during this challenging time isn’t always easy. The natural response of 

most caregivers is to put their own feelings and needs aside. They try to focus on the person with 

cancer and the many tasks of caregiving. This may be fine for a short time. But it can be hard to 

keep up for a long time. And it’s not good for your health. If you don’t take care of yourself, you 

won’t be able to take care of others. It’s important for everyone that you give care to you.

There are other 

booklets available that 

talk about how to give 

care to a loved one. 

But the purpose of this 

booklet is to focus on 

you and your needs.

“I think you can be the best caregiver you 

can be by taking care of yourself, by trying 

to get as much information as possible, and 

by letting yourself lean on the people who 

are willing to help you.” —Leneice
2
3

Adjusting to Being a Caregiver

Changing Roles

Whether you’re younger or older, you may find yourself in a new role as a caregiver. You may 

have been an active part of someone’s life before cancer, but perhaps now the way you support 

that person is different. It may be in a way in which you haven’t had much experience, or in 

a way that feels more intense than before. Even though caregiving may feel new to you now, 

many caregivers say that they learn more as they go through their loved one’s cancer experience. 

Common situations that they describe:

n Your spouse or partner may feel comfortable with only you taking care of him.

n Your parent may have a hard time accepting help from you (her adult child) since she’s 

always been used to caring for you.

n Your adult child with cancer may not want to rely on his parents for care.

n You may have health problems yourself, making it hard physically and emotionally to take 

care of someone else.

Whatever your roles are now, accepting the 

changes may be tough. It’s very common to feel 

confused and stressed at this time. If you can, 

try to share your feelings with other loved ones 

or join a support group. Or you may choose to 

seek help from a counselor or psychologist. Many 

caregivers say that talking with a counselor helped 

them. They feel they were able to say things that 

they weren’t able to say to their loved ones. See 

“Talking with Family and Friends” on page 21 for 

more tips. 

Coping with Your Feelings

You’ve probably felt a range of feelings as you care 

for your loved one. They can be quite strong and may come and go as you go through treatment 

with the patient. Many caregivers describe it as being “like a rollercoaster.” You may feel sad, afraid, 

angry, and worried. There is no right or wrong way to feel or react. These feelings are all normal.

You may relate to all of the feelings on the next page, or just a few. You may feel them at 

different times, with some days being better than others. It may help to know that other 

caregivers have felt the same way that you do. One of the first steps in coping with feelings is to 

recognize that they exist and that having them is normal. Try to give yourself time to understand 

and work through your range of emotions.

“Once a week, after I take 

the kids to school, I take Mom 

to her doctor’s appointment. 

Then I take her home and fix 

her lunch and sit with her 

awhile. She argues with me 

every time because she wants 

to do it herself. It’s hard for 

her to have to rely on me.” 

—Lynn
4

Anger. Many caregivers say they often feel angry 

with themselves, their family members, or the 

patient. Sometimes anger comes from feelings that 

are hard to show, such as fear, panic, or worry. Or 

it may come from resentment of all that you’re 

going through. If you can, try to avoid lashing out 

at others because of these emotions. Anger can 

be healthy if you handle it the right way. It can 

help motivate you to take action, find out more, 

or make positive changes in your life. But if these 

feelings persist and you remain angry at those 

around you, seek help from a counselor or other 

mental health professional.

Grief. You may be mourning the loss of what you hold most dear—your loved one’s health or 

the life you had with each other before cancer. It’s important to give yourself permission to 

grieve these losses. It takes time to work through and accept all the changes that are occurring.

Guilt. Feeling guilty is a common reaction for caregivers. You may worry that you aren’t helping 

enough, or that your work or distance from your loved one is getting in the way. You may even 

feel guilty that you’re healthy. Or you may feel guilty for not acting upbeat or cheerful. But know 

that it’s okay. You have reasons to feel upset, and hiding these feelings may keep other people 

from understanding your needs.

Anxiety and depression. Anxiety means you have extra worry, you can’t relax, you feel tense, or 

you have panic attacks. Many people worry about how to pay bills, how the cancer will affect the 

family, and of course, how their loved one is doing. Depression is a persistent sadness that lasts 

more than two weeks. If any of these symptoms start affecting your ability to function normally, 

talk with your health care provider. Don’t think that you need to tough it out without any help. 

There are ways your symptoms can be eased during this hard time.

Hope or hopelessness. You may feel hope or hopelessness to different degrees throughout your 

loved one’s cancer treatment. And what you hope for may change over time. You may hope for 

a cure most of all. But you may also hope for other things, such as comfort, peace, acceptance, 

and joy. If you’re not able to get rid of a feeling of hopelessness, talk to a trusted family member, 

friend, health provider, or spiritual or faith leader. As a caregiver, feelings of hope can get you 

through the next 5 minutes or the next 5 days.

Loneliness. You can feel alone in your 

role as a caregiver, even if you have lots 

of people around you. It’s easy to feel like 

no one understands what you’re going 

through. You may feel lonely because you 

have less time to see people and do things 

that you used to. Whatever your situation, 

you aren’t alone. Other caregivers share 

your feelings. See page 12 for ways to 

connect with others. 

“It’s emotionally exhausting, 

and I never know what to 

expect. One minute, things are 

looking up. Then a couple of 

hours later, something happens 

and I don’t have the answers.” 

—David 

“There are times when you don’t 

know how to help. You can’t take 

away the pain. You can’t take 

away the frustration. All you can 

do is be there, and it’s a very 

helpless feeling.” —Cecile
5

Other Ways to Cope

Let go of mistakes. You can’t be perfect. No one is. The 

best we can do is to learn from our mistakes and move on. 

Continue to do the best you can. And try not to expect too 

much from yourself. 

Cry or express your feelings. You don’t have to be upbeat all 

the time or pretend to be cheerful. Give yourself time to cope 

with all the changes you’re going through. It’s okay to cry and 

show that you are sad or upset.

Put your energy into the things that matter to you. Focus on the things you feel are worth 

your time and energy. Let the other things go for now. For example, don’t fold the clothes when 

you’re tired. Go ahead and take time to rest.

Understand where anger comes from. Your loved one may get angry with you. It’s very 

common for people to direct their feelings at those who are closest. Their stress, fears, and 

worries may come out as anger. Try not to take it personally. Sometimes patients don’t realize the 

effect their anger has on others. So it may help to share your feelings with them when they’re 

calm. Try to remember that the anger isn’t really about you. 

Forgive yourself. This is one of the most important things you can do. Chances are that you 

are doing what you can at this moment. Each new moment and day gives you a new chance to 

try again.

Knowing Your Strengths and Limits

One way that caregivers cope is to focus their energy on things they can control. This can mean:

n Helping schedule doctor visits 

n Helping with daily needs such as meals and errands 

n Taking on your loved one’s tasks

n Learning more about cancer and 

treatment options

n Doing whatever else you can do

Many caregivers say that, looking back, they took on 

too much themselves. Or they wish they had asked 

for help sooner. Take an honest look at what you 

can and can’t do. What things do you need or want 

to do yourself? What tasks can you give to or share 

with others? Be willing to let go of things that aren’t 

essential for you to do.

“Growing up, we were 

taught two rules. One 

is, ‘Don’t sweat the 

small stuff.’ And second, 

‘Everything is small stuff.’ 

And you have to decide 

what’s important to you. 

Focus on what you can 

do, not what you can’t.” 

—James
6

Setting Your Priorities 

Make a list of your weekly tasks and activities. Figure 

out how much time you spend on each one and how 

important it is. Scratch things off your to-do list if they 

aren’t important. That will give you more time for the 

things you really want and need to do. This may mean 

disappointing someone else. But you need to take care 

of what’s important to you, regardless of what others 

may think. Most people will understand if you tell 

them what is going on.

Why Getting Help Is Important

Accepting help from others isn’t always easy. When tough things happen, many people tend to 

pull away. They think, “We can handle this on our own.” But things can get harder as the patient 

goes through treatment. You may need to change your schedule and take on new tasks. As a 

result, many caregivers have said, “There’s just too much on my plate.”

Remember that getting help for yourself can also help your loved one because:

n You may stay healthier.

n Your loved one may feel less guilty about all the things that you’re doing.

n Some of your helpers may offer time and skills that you don’t have.

How Can Others Help You?

Would you find it helpful if someone made dinner for you or ran some of your errands? If so, you 

may benefit from having people help with tasks you don’t have time to do. 

People want to help, but many don’t know what you need or how to offer it. It’s okay for you to 

take the first step. Ask for what you need and for the things that would be most helpful to you. 

For example, you may want someone to:

n Help with household chores, such as 

cooking, cleaning, shopping, yard work, 

and childcare or eldercare

n Talk with you and listen to your feelings

n Drive your loved one to appointments

n Pick up a child from school or activities

n Set up a Web site where people can find out 

what support you need or receive updates 

on your loved one

n Look up information that you need

n Be the contact person and help keep others 

updated on your loved one’s situation

“You have to learn that if 

people offer, let them do 

something. Ask for what 

you need, because they 

don’t know. You have to 

be willing to let go of your 

pride and let them help 

you.” —Chevonne
7

Who Can Help?

Think about people who can help you with tasks. Think of all the people and groups you know, 

including family, friends, neighbors, and coworkers. Members of your faith community, civic 

groups, and associations may also be able to help. The hospital or cancer center may also be able 

to tell you about services they offer, or have a list of agencies to call.

Finding Respite Help

Respite (RES-pit) helpers spend time with your loved one. They can be paid or may volunteer 

their time. Many caregivers say they wish they had gotten respite help sooner. It can leave you 

free to rest, see friends, run errands, or do whatever you’d like to do. Respite caregivers can 

also help with physical demands, such as lifting the patient into a bed or a chair. If this service 

appeals to you, you may want to:

n Talk with your loved one about having someone 

come into your home to help out from time 

to time.

n Get referrals from friends, health care professionals, 

or your local agency on aging.

n Ask respite helpers what types of tasks they do.

You can get respite help from family and friends, but 

also government agencies or nonprofit groups. Whatever 

you do, remember that it isn’t a failure on your part as a 

caregiver if you need some help and time to yourself.

Be Prepared for Some People to Say No

Sometimes people may not be able to help. This may 

hurt your feelings or make you angry. It may be especially hard coming from people that you 

expected help from. You might wonder why someone wouldn’t offer to help you. Some common 

reasons are: 

n Some people may be coping with their own problems, or a may not have the time.

n They are afraid of cancer or may have already had a bad experience with cancer. They don’t 

want to get involved and feel pain all over again.

n Some people believe it’s best to keep a distance when people are struggling.

n Sometimes people don’t realize how hard things really are for you. Or they don’t understand 

that you need help unless you ask them for it directly.

n Some people feel awkward because they don’t know how to show they care.

If someone isn’t giving you the help you need, you may want to talk to them and explain your 

needs. Or you can just let it go. But if the relationship is important, you may want to tell the 

person how you feel. This can help prevent resentment or stress from building up. These feelings 

could hurt your relationship in the long run.

“We’ve gotten lots of 

support, and some of it 

comes from people we 

expected it from. But a 

lot has come from those 

we don’t know very well. 

And others we do know 

well have stayed away. 

You just never know 

with people.” —Jessie
8

Tips on How to Ask for Help

Roadblock What Others Have Done

“His cancer is a private 

thing. I’d have to tell 

people about it to get 

any support.”

You and your loved one can decide who to tell, what to 

tell them, and when and how. Some options are to: 

n Tell only a few people close to you for now.

n Limit specifics about what you share. You can say, 

“He’s sick,” or “She isn’t feeling well today.”

n Ask another family member, friend, or member of 

your faith or spiritual community to share the news.

n Get help from services or agencies in your area instead 

of from people you know.

“Everyone has a lot 

going on. I don’t want 

to bother them or put 

them out.”

If you’re worried about being a burden to others, here are 

some things to think about:

n Many people probably want to help.

n If you let more people help, it can ease your workload. 

n Would you want to help someone else who was in a 

similar situation? Would you mind if they asked you 

to lend a hand?

“I can’t explain it, but 

I just don’t feel up to 

reaching out right now.”

Many people don’t want support when they need it 

most. You may often back away from your regular social 

life and from people in general. You may feel that it’s just 

too much work to ask for help. 

Talk with someone you trust, such as a friend, member of 

your faith community, or counselor. This person can help 

you sort out your thoughts and feelings. They can also 

help you find ways to get support. 

“It’s my duty to take 

care of my family, not 

someone else’s.”

Having a support system is a way of taking care of your 

family. Giving some tasks to others lets you focus on 

those that you feel you should do yourself. 
9

Long-Distance Caregiving

It can be really tough to be away from a loved one who has cancer. You may feel like you’re 

a step behind in knowing what is happening with her care. Yet even if you live far away, it’s 

possible for you to give support and be a problem-solver and care coordinator. 

Caregivers who live more than an hour away from their loved ones most often rely on the 

telephone or e-mail as their communication link. But using these to assess someone’s needs can 

be limiting. Aside from true medical emergencies, long-distance caregivers are faced with judging 

whether situations can be dealt with over the phone or require an in-person visit.

Finding Contacts

Many long-distance caregivers say that it helps to explore 

both paid and volunteer ways to provide support. Try to 

create a support network of people who live near your 

loved one whom you could call day or night in a crisis 

or just to check in. You could also look into volunteer 

visitors, adult day care centers, or meal delivery services 

in the area. Having a copy of the local phone book for 

your loved one’s area or a list of Web sites can also give 

you quick access to resources. Share a list of home, work, 

and cell phone numbers with the health care team and 

others in case of an emergency. 

Other Tips

n Ask a local family member or friend to update 

you daily by e-mail. Or, consider creating a Web 

site to share news about your loved one’s condition 

and needs.

n Talk to electronic or computer experts to find out about other ways to connect with people. 

New advances using video and the Internet are being made every day. 

n Airlines or bus lines may have special deals for patients or family members. The hospital 

social worker may also know of other resources, such as private pilots or companies that help 

people with cancer and their families.

n If you are traveling to see your loved one, time your flights or drives so that you have time 

to rest when you return. Many long-distance caregivers say that they don’t allow themselves 

enough time to rest after their visits.

n Consider getting a phone card from a discount store to cut down on long-distance bills. Or, 

review your long-distance and cell phone plans. See if you can make any changes that would 

reduce your bills.

“Our family is spread 

throughout the U.S., so it’s 

hard to have a hands-on 

experience. But the phone 

calls have increased, with 

them calling to say, ‘I love 

you, and what can I do for 

you?’ Even though there 

isn’t much they can do to 

help me with Mom, just to 

have them call more has 

made it a little better.” 

—Patty
10

Caring for Your Mind, Body, and Spirit

Make Time for Yourself

You may feel that your needs aren’t important right now. Or maybe by the time you’ve taken 

care of everything else you have to do, there’s no time left for yourself. Or you may feel guilty 

that you can enjoy things that your loved one can’t right now. 

Most caregivers say they have those same feelings. But caring for your own needs, hopes, and 

desires is important to give you the strength to carry on. (See the Caregiver’s Bill of Rights on 

page 41.)

Taking time to recharge your mind, body, and spirit can help you be a better caregiver. You may 

want to think about: 

n Finding nice things you can do for yourself—even just a few minutes can help

n Cutting back on personal activities, rather than cutting them out entirely

n Finding things others can do or arrange for you, such as appointments or errands

n Looking for easy ways to connect with friends

n Finding larger chunks of “off-duty” time

Myths About Taking Care of Yourself*

Myth Fact

“Taking care of myself

means that I have to be

away from my loved one.”

You can do things to take care of yourself with or 

without your loved one in the room with you. What’s 

important is that you do not neglect yourself.

“Taking care of myself

takes a lot of time away

from other things.”

Some self-care takes only a few minutes, such as 

reading an upbeat passage from a book. Other selfcare can be done in moments between longer tasks.

“I’d have to learn how

to focus on myself. I don’t

know if I can start.”

Whenever things make you feel happier, lighter, 

more relaxed, or more energized, these count as 

taking care of yourself. Think of things that you 

already know work for you.

* The Hospice of the Florida Suncoast. Caring For Yourself While Caring For Others, Adapted with permission.
11

Ways to Nurture Yourself 

Take Stock of Your Own Feelings

Giving yourself an outlet for your own thoughts and 

feelings is important. Think about what would help 

lift your spirits. Would talking with others help ease 

your load? Or would you rather have quiet time by 

yourself? Maybe you need both, depending on what’s 

going on in your life. It’s helpful for you and others 

to know what you need.

Find Comfort

Your mind needs a break from the demands of caregiving. Think about what gives you comfort 

or helps you relax. Caregivers say that even a few minutes a day without interruptions helps 

them to cope and focus. 

Take 15–30 minutes each day to do something for yourself, no matter how small it is. (“See Small 

Things I Can Do for Me” on page 12.) For example, caregivers often find that they feel less tired 

and stressed after light exercise. Try to make time for taking a walk, going for a run, or doing 

gentle stretches. 

You may find that it’s hard to relax even 

when you have time for it. Some caregivers 

find it helpful to do exercises designed to 

help you relax, such as stretching or yoga. 

Other relaxing activities include taking deep 

breaths or just sitting still. 

“I just need some quiet 

time. If my husband’s 

taking a nap, I will read 

a book or sit on the porch 

because sometimes it’s 

so intense. We have days 

where we go straight from 

chemo to radiation. It can 

be very tiring.” —Adele
12

Join a Support Group

Support groups can meet in 

person, by phone, or over 

the Internet. They may help 

you gain new insights into 

what is happening, get ideas 

about how to cope, and help 

you know that you’re not 

alone. In a support group, 

people may talk about their 

feelings, trade advice, and 

try to help others who are 

dealing with the same kinds 

of issues. Some people like 

to go and just listen. And 

others prefer not to join support groups at all. Some people 

aren’t comfortable with this kind of sharing. 

If you can’t find a group in your area, try a support group 

on the Internet. Some caregivers say Web sites with 

support groups have helped them a lot.

Talk to a Counselor 

You may be feeling overwhelmed and feel like talking 

to someone outside your inner circle of support. Some 

caregivers find it helpful to talk to a counselor, social 

worker, psychologist or other mental health professional. 

Others also find it helpful to turn to a leader in their faith 

or spiritual community. All may be able to help you talk 

about things that you don’t feel you can talk about with 

your loved one or others around you. You also might find 

ways of expressing your feelings and learn ways of coping 

that you hadn’t thought of before.

Connect with Your Loved One 

Cancer may bring you and your loved one together more 

than ever before. Often people become closer as they face 

challenges together. If you can, take time to share special 

moments with one another. Try to gain strength from all 

you are going through together, and what you have dealt 

with so far. This may help you move toward the future 

with a positive outlook and feelings of hope.

“What I need at 

least once or twice 

a week is to talk 

to one person or 

a group of people 

who are in the 

same shoes as 

I am.” —Vince

Small Things 

I Can Do for Me

Each day, take some time to 

do something for yourself, no 

matter how small it is. This 

might include: 

n Napping

n Exercising or yoga 

n Keeping up with a hobby

n Taking a drive

n Seeing a movie

n Working in the yard

n Going shopping

n Catching up on phone 

calls, letters or e-mail

You may find that it’s hard to 

relax even when you have time 

for it. Some caregivers find it 

helpful to do exercises such as 

deep breathing or meditating.
13

Connect with Others

Studies show that connecting with other people is 

very important to most caregivers. It’s especially 

helpful when you feel overwhelmed or want to say 

things that you can’t say to your loved one. Try to 

find someone you can really open up to about your 

feelings or fears. You may find it helpful to talk with 

someone outside the situation. Also, it may help to 

have an informal network of people to contact, either 

by phone or in person. But if you’re concerned about 

a caregiving issue, you may want to talk with your 

loved one’s doctor. Knowledge can help reduce fears. 

Look for the Positive

It can be hard finding positive moments when you’re 

busy caregiving. It can also be hard to adjust to your role as a caregiver. Caregivers say that 

looking for the good things in life helps them feel better. Once a day, think about something that 

you find rewarding about caregiving, such as gratitude you’ve received, or extra support from a 

health care provider. You might also take a moment to feel good about anything else from the 

day that is positive—a nice sunset, a hug, or something funny that you heard or read. 

Let Yourself Laugh

It’s okay to laugh, even when your loved one is in 

treatment. In fact, it’s healthy. Laughter releases 

tension and makes you feel better. You can read 

humor columns, watch comedy shows, or talk with 

upbeat friends. Or just remember funny things that 

have happened to you in the past. Keeping your 

sense of humor in trying times is a good coping skill.

Write in a Journal 

Research shows that writing or journaling can help 

relieve negative thoughts and feelings. And it may actually help improve your own health. You 

can write about any topic. You might write about your most stressful experiences. Or you may 

want to express your deepest thoughts and feelings. You can also write about things that make 

you feel good, such as a pretty day or a kind coworker or friend.

Another technique people use is to write down whatever comes to mind. It doesn’t have to make 

sense or have correct grammar. It just helps to get all the “jumble” out of your mind and onto 

the paper.

“It’s okay for a neighbor 

to ask how I’m doing 

when they want the 

answer to be, ‘I’m fine.’ 

But when I’m really not 

fine, all I need is to talk 

to someone who can 

understand, or just hear 

me out. You don’t have to 

have an answer, just listen 

to me.” —Kathy
14

Be Thankful 

You may feel thankful that you can be there for your loved one. You may be glad for a chance 

to do something positive and give to another person in a way you never knew you could. 

Some caregivers feel that they’ve been given the chance to build or strengthen a relationship. 

This doesn’t mean that caregiving is easy. But finding meaning in caregiving can make it 

easier to manage. 

Do Your Usual Activities

If you can, try to keep doing some of your regular activities. Studies show that not doing those 

activities increases the stress you feel. Keep it simple and stick with things you do well. Be willing 

to change your routines. You may have to do things at a different time of day or for less time 

than you do normally. 

Learn More About Cancer

Sometimes, understanding your loved one’s medical situation can make you feel more confident 

and in control. For example, you may want to know more about his stage of cancer. It may help 

you to know what to expect during treatment, such as the tests and procedures that will be done, 

as well as the side effects that will result. (See the Resources section on page 42.)

Caring for Your Body

You may find yourself so busy and concerned about your loved one that you don’t pay attention 

to your own physical health. But it’s very important that you take care of your health. Taking 

care of yourself will give you strength to help others.

New stresses and daily demands often add to any health problems caregivers already have. And 

if you are sick or have an injury that requires you to be careful, it’s even more important that you 

take care of yourself. Here are some changes caregivers often have:

n Fatigue (feeling tired)

n Weaker immune system (poor ability to fight off illness)

n Sleep problems

n Slower healing of wounds

n Higher blood pressure

n Changes in appetite or weight

n Headaches

n Anxiety, depression, or other mood changes

“When I get home from 

class, my mom and 

I take turns running 

while one of us stays 

with my dad. My run 

is my time for me, 

and the only way I 

can keep it together.” 

—Meredith
15

Taking Care of Yourself 

These ideas for taking care of yourself may sound easy. But they’re a challenge for most 

caregivers. You’ll need to pay attention to how you’re feeling, in both body and mind. Even 

though you may be putting someone else’s needs first, it’s important to:

n Keep up with your own checkups, screenings, and other medical needs.

n Try to remember to take your medicines as prescribed. Ask your doctor to give you a larger 

prescription to save trips to the pharmacy. Find out if your grocery store or pharmacy delivers.

n Try to eat healthy meals. Eating well will help you keep up your strength. If your loved one 

is in the hospital or has long doctor’s appointments, bring easy-to-prepare food from home. 

For example, sandwiches, salads, or packaged foods and canned meats fit easily into a lunch 

container.

n Get enough rest. Listening to soft music or doing breathing exercises may help you fall 

asleep. Short naps can energize you if you aren’t getting enough sleep. Be sure to talk with 

your doctor if lack of sleep becomes an ongoing problem.

n Exercise. Walking, swimming, running, or bike riding are only a few ways to get your body 

moving. Any kind of exercise (including working in the garden, cleaning, mowing, or going 

up stairs) can help you keep your body healthy. Finding at least 15-30 minutes a day to 

exercise may make you feel better and help you manage your stress.

n Make time for yourself to relax. You may choose to stretch, read, watch television, or talk 

on the phone. Whatever helps you unwind, you should take the time to do it. It’s important 

to tend to your own needs and reduce your own stress levels. 
16

Do You Need Help with Depression or Anxiety?

As mentioned earlier, many of the things listed below are normal. This is especially 

true when you are dealing with a lot of stress. But if you have any of these signs for 

more than two weeks, let your health care provider know. He or she may have ideas 

for treatment.

Changes in Your Feelings

n Feelings of being worried, anxious, 

“blue,” or depressed that don’t 

go away

n Feeling guilty or worthless

n Feeling overwhelmed, out of 

control, or shaky

n Feeling helpless or hopeless

n Feeling grouchy or moody

n Crying a lot

n Thoughts of hurting or killing 

yourself

n Focusing on worries or problems

n Not being able to get a thought 

out of your mind

n Not being able to enjoy things 

anymore (such as food, being 

with friends, sex)

n Avoiding situations or things that 

you know are really harmless

n Having trouble concentrating or 

feeling scatterbrained

n Feeling that you are “losing it”

Body Changes 

n Weight loss or weight gain 

without meaning to

n Trouble sleeping or needing 

more sleep

n Racing heartbeat

n Dry mouth

n Sweating a lot

n Upset stomach

n Diarrhea (loose, watery stools)

n Slowing down physically

n Fatigue that won’t go away

n Headaches or other aches 

and pains
17

Finding Meaning During Cancer

Many caregivers find that cancer causes them to look at life in new ways. They may reflect 

on spirituality, the purpose of life, and what they value most. It’s normal to view the cancer 

experience both negatively and positively at the same time. You and your loved one may be 

struggling to understand why cancer has entered your lives. You may wonder why you have to 

endure such a trial in your life. 

The way cancer affects one’s faith or religion is different for everyone. Some turn away from their 

religion, while others turn toward it. It’s common to question one’s faith after cancer. But for 

others, seeking answers and searching for personal meaning helps them cope. 

Many caregivers have found that their faith, religion, or sense of spirituality is a source of 

strength as they face life during cancer treatment. Many say that through their faith, they 

have been able to find meaning in their lives and make sense of the cancer experience. Faith 

or religion can also be a way for caregivers and their loved ones to connect with others in their 

community. These may be people who share similar experiences or outlooks, or who can provide 

support. Studies have also shown that for some, faith can be an important part of both coping 

with and recovering from cancer.

Here are ways you may find comfort and meaning through your faith or spirituality:

n Reading materials that are uplifting and can help you connect to a higher power 

n Praying or meditating to help you feel less fearful or anxious 

n Talking about your concerns or fears with a leader of your faith or spiritual community

n Going to religious or spiritual gatherings to meet new people 

n Talking to others who have had similar experiences 

n Finding spiritual or faith-based resources for people dealing with chronic illnesses like cancer 
18
19

Talking with the Health Care Team

You will be asked to do many things during your loved one’s treatment. One of your main roles 

may be to help your loved one work with his health care team. You may be asked to go to doctor 

visits, among other things. A few tips are listed below. 

Helping to Get Ready for Visits to the Doctor

n Keep a file or notebook of the patient’s medical information. Include the dates of procedures 

and tests. Bring this file to doctor visits.

n Keep a list of names and doses of medicines and how often they are taken. Bring this list 

with you.

n Use only trusted sources if you do research for your loved one, such as government and 

national organizations.

n Make a list of questions and concerns. List the most important questions first.

n Call ahead of time to make sure of the following:

•	 The doctor has copies of all needed test results, records, and other paperwork.

•	 You have directions, transportation, and, if needed, hotel information.

n If you and the patient have a lot to talk about with the doctor, ask whether:

•	 You can have a longer appointment (check on fees for this).

•	 You can talk to the doctor by phone if there are further questions. Or perhaps others on

staff can help you. For example, a nurse may be able to answer many of your questions. 

n Talk with your loved one before the visit to help prepare yourselves for the possibility that 

the information given could be different than what you both expect.

Talking with the Doctor 

If your loved one takes you with him to talk with the doctor, here are some tips:

n After asking a question, if you’re unclear about the answer, ask the doctor to explain more to 

help you understand. 

n Talk with the doctor about any medical advice you have found on your own. Some advice 

may be incorrect or misleading, or may conflict with what the doctor has told your loved one. 

n If a concern isn’t being addressed, ask the question in a different way. This may help the 

doctor understand your concern better. 

n Take notes or ask if you can tape-record the visit. 

n Know that your loved one has the right to change doctors if he feels his needs aren’t 

being addressed.
20

Asking About Pain 

People who have their pain managed are able to focus on 

healing and on enjoying life. Although different side effects 

happen with cancer treatment, pain is one that can be especially 

troubling. Many caregivers say the one thing they hesitate to ask 

about is pain. If your loved one is preoccupied by pain, you may 

notice personality changes. These might include being distant, not 

being able to sleep, or not being able to focus on daily activities. 

Your loved one does not have to be in pain or discomfort. The 

medical team should ask regularly about pain levels, but it’s up to 

you and your loved one to be open about any pain. Some people 

assume that there will always be severe pain with cancer treatment. 

This is not true. Pain can be managed throughout your loved one’s 

treatment. The key is to talk regularly with the health care team 

about pain and other symptoms.

Sometimes people with cancer don’t want to talk to their 

health care team about their pain. They worry that the doctor 

will think that they’re complaining or that pain means the cancer 

is getting worse. Or they think that pain is just something they 

have to accept. Sometimes people get used to the pain and forget 

what it’s like to live without it.

It’s important for your loved one to speak up. Or you can speak 

up on his behalf. Be honest with the doctor about pain and how 

it is affecting the daily routine. You and your loved one may need 

to talk to the health care team on a regular basis about the pain 

medicines given. These drugs can be adjusted or changed if they 

aren’t working or are causing unpleasant side effects. 

Don’t be afraid to ask for stronger pain relievers or larger doses if 

your loved one needs them. Addiction is rarely an issue in people 

with cancer. Instead, drugs help patients stay as comfortable 

as possible. People with a history of addiction will want to talk 

with their doctor about any concerns. To learn more, see the NCI 

booklet, Pain Control. (See inside cover.)

Should We Get a Second Opinion?

Some people worry that doctors will be offended if they ask for 

a second opinion. Usually the opposite is true. Most doctors 

welcome a second opinion. And many health insurance 

companies will pay for them. If your loved one gets a second 

opinion, the doctor may agree with the first doctor’s treatment 

plan. Or the second doctor may suggest another approach. Either 

way, your loved one has more information and perhaps a greater 

sense of control. You can both feel more confident about the 

decisions you make, knowing that you’ve looked at your options.

Questions To Ask 

About Treatment

n What medical records, 

or copies, would you 

like us to bring?

n What can my loved 

one do beforehand to 

prepare for treatment? 

n How long will the 

treatment take? 

n Can my loved one go 

to and from treatment 

alone? Should someone 

else go with him?

n Can I or another family 

member be with my 

loved one during the 

treatment?

n What can I do to 

help her feel more 

comfortable during 

the treatment?

n What are the side effects 

of the treatment?

n After treatment, what 

do we need to watch 

for? When should we 

call you? 

n How does filing 

insurance claims work? 

Who can help us if 

we have questions 

or problems?
21

Talking with Family and Friends

Helping Children and Teens Cope

Children as young as 18 months begin to understand the world around them. It’s important 

to be honest with them and explain that your loved one has cancer. Experts say that telling 

children the truth about cancer is better than leaving their imagination free to draw conclusions 

that are worse than reality. 

Your own daily stresses and fears can affect how you act with your kids. You may be torn 

between wanting to give time to your kids, and knowing your loved one with cancer also needs 

your time. That’s why it’s good to let children know how you’re feeling, as well as to find out 

how they’re feeling. And never assume you know what your children are thinking. You can’t 

predict how they will react to changes, losses, and information.

This section provides ideas for helping children cope in healthy ways.

Start Giving Information 

For some families, talking about serious issues is 

uncomfortable. But as hard as it may be, not talking 

about these issues can be worse for everyone. Here are 

some things you might want to say to children of any 

age about your loved one’s cancer:

About Cancer 

n “Nothing you did, thought, or said caused the cancer.”

n “You are not responsible for making her well. But 

there are ways you can help her feel better while the 

doctors take good care of her.”

n “You can’t catch cancer from another person.”

n “Just because someone has cancer doesn’t mean 

other people in the family will get it—even later. 

And that includes you.” 

About Dealing with Cancer

n “It’s okay to be upset, angry, scared, or sad about 

all this. You may feel all kinds of feelings. You’ll 

probably feel happy sometimes, too. It’s fine to feel 

all these things.” 

n “No matter what happens, you will always be taken care of.” 

n “People may act differently around you because they’re worried about you or worried 

about all of us.”

“This is the only childhood 

they will ever have, a 

crucial time of development. 

Choose to see your illness 

not as an obstacle but as 

a powerful platform from 

which your messages are 

amplified, helping your 

children understand and 

believe you and feel your 

love in a powerful way....

When the facts are couched 

in love and hopefulness, 

you can guide your children 

toward a life-enhancing 

perception of reality.” 

—Wendy Harpham, MD* 

* Harpham, W. 2004. When A Parent Has Cancer: A Guide to Caring For Your Children. New York, NY; Harper Paperbacks. 

Adapted with permission.
22
23

Be Open to All Forms of Communication

Very young children may have trouble talking about the impact of their parent’s illness on them. 

You might try asking them to draw a picture of the person with cancer. Or have them play dolls, 

with one doll being the patient. Other forms of art can help older children express themselves.

Keep in mind that young children may ask the same question over and over. This is normal, and 

you should calmly answer the question each time. Teens may ask difficult questions or questions 

for which you don’t have answers. Be honest with them. When the answer is not known, you 

can teach your teens to live with unanswerable questions and uncertainty. Remember that 

thinking through these issues is part of your children’s process of growing up. 

Talking About Death* 

Be prepared for your children’s questions and concerns about death. They may worry, even if 

your loved one’s prognosis is good. 

n Teach them that cancer is an illness. If your loved one’s prognosis is good, let them know 

that the type of cancer he or she has is one for which the doctors have good treatments to 

get him or her well again. 

n Ask them what they think about your loved one’s cancer and what they worry about. 

Then listen patiently to their answers. Correct misinformation. 

n Tell them the truth, couched in love and hopefulness. Instead of trying to convince 

them of a good outcome (something that you can’t guarantee), reassure them that your loved 

one is getting good care, you are hoping for a recovery, and that your children can live well 

with the uncertainty. 

n Teach your children that even if the unexpected happened due to cancer or anything else, 

they would be taken care of and be okay. Although they would feel sad for a while and 

they would miss your loved one, they would also feel that love forever and learn how to be 

happy again. 

n Remind them that your loved one is not dying now. Reassure them that you will tell them if 

this ever changes and dying becomes a possibility. Conclude by telling them you expect and 

hope your loved one to get better, and encourage them to focus on today. 

Stay Involved in Activities

It can be hard to remain active in your children’s lives during your loved one’s treatment. But it 

may be more important than ever to do so. On the next page are some ways that other caregivers 

have stayed connected with their children.

* Harpham, W. 2004. When A Parent Has Cancer: A Guide to Caring For Your Children. New York, NY; Harper Paperbacks. 

Adapted with permission.
24

Ways to Stay Involved in Your Children’s Lives

n Focus on the most important activities.

If you can only do one thing with each of your children, what’s the most important? 

Make a list of all the options. If possible, get the children’s input. You may be 

surprised by what they choose.

n Send someone else. 

Is there another adult in your child’s life who can go to an event that you can’t? 

Maybe this adult can videotape or take pictures of the event.

n Carpool. 

Take turns driving with other parents. 

n Be around before and after. 

Try to be around to help prepare your children for an activity and to welcome 

them home.

n Ask for a replay. 

If you can’t be there, sit down with your children to hear about what they did. 

Or have your children re-create some of the things that happened.

n Create new ways of connecting. 

Come up with new ways to connect with your children. Make a point of tucking 

them in at bedtime, reading to them, eating together, or talking on the phone or by 

e-mail. Have a set time when your children do homework while you do something 

else in the same room. Or, take a walk together. Even 5 minutes alone with each child 

without interruptions can make a world of difference.

n Involve your children in “your” activities. 

Could your children join you for any of your activities? Even going to the grocery 

store could be time spent together. Your children may feel special if they can attend 

adult events with you.

n Stay involved with their schooling. 

Check with their teachers to find out how your children are doing in school. 

Or, ask a guidance counselor or coach for input. 
25

Understand Your Children’s Actions and Feelings

Children react to a loved one’s cancer in many different ways. They may:

n Be confused, scared, angry, lonely, or overwhelmed

n Be scared or unsure how to act when they see the treatment’s effects on your loved one

n Act clingy or miss the attention they used to get

n Feel responsible or guilty

n Get angry if they’re asked to do more chores around the house

n Get into trouble at school or neglect their homework

n Have trouble eating, sleeping, keeping up with schoolwork, or relating to friends

n Be angry that someone else is taking care of them now

These behaviors are normal. Still, your child may need extra support to deal with their troubles. 

(See the tips on the next page.)

Understanding Teens’ Feelings

With teens, problems may be less obvious or more complicated than with younger children. 

Here are some things to keep in mind:

n Teens are supposed to be moving toward independence from their families. This is natural for 

them. Cancer makes this harder to do, leading some teens to act out or withdraw. 

n Teens may give off the message, “leave me alone.” But they still need and want your 

attention and support.

n Being a teen is always stressful. Some moods you see may have nothing to do with your loved 

one’s illness. 

n Teens want to feel “normal.” Make sure that they 

have time for regular activities.

n Keep the lines of communication open. Involve 

teens in decisions as much as possible. Make sure 

that they have someone to talk to about what is 

going on in their life. 

It may be hard for you to stay on top of your teen’s 

activities and feelings right now. If so, ask another 

responsible adult to stay connected with your teen. 

Also, ask your social worker about Internet resources 

for this age group. Many organizations have online 

chats and forums for support.
26

How Children May React, and What to Do*

If your children seem confused or scared: 

n Remind them that you love them.

n Set aside special time that each child can spend with 

you or your loved one. 

n Try to stick to reassuring routines, such as reading 

bedtime stories or checking in with them after school. 

n Be together, even if you are each doing different 

things in the same room. 

n Prepare children for changes and side effects of 

treatment (such as hair loss, vomiting, or tiredness) 

so they won’t be surprised. 

n Remind your children that your loved one may seem worse for a while before he 

gets better. Explain that this is part of the treatment that can help make him better 

in the end. 

If your children seem lonely or miss the attention they used to get: 

n Help your children talk about their feelings and ask you questions. Let them know 

you’re listening and validate their feelings. 

n Find new ways to give your children attention. You may want to leave notes where 

they will find them or schedule special phone conversations if you’re spending a lot of 

time at the hospital or away from home. 

n Think of a special treat your children might enjoy.

n Encourage them to talk with other kids or adults to ease their loneliness.

If your children have stopped doing their regular activities: 

n It isn’t okay for your kids to respond to the changes at home by stopping normal 

activities or letting grades and friendships slide. Find out why your children have 

stopped any usual activities. They may be:

•	 Feeling tired

•	 Feeling unhappy

•	 Having trouble getting along with friends

•	 Unable to concentrate or succeed

* J. I. Bromberg, C. S. McCabe, A. F. Patenaude. 2002. We Can Cope: When a Parent Has Cancer. Newton, MA: Inflexxion.
27

n Talk about the importance of adjusting to these changes at home. Ask your children 

how you can help them get back to their normal routines. 

If your children feel guilty and think they somehow caused the cancer: 

n State clearly, and remind them, “You did not cause the cancer. You can’t cause cancer 

by anything you do, think, or say.” 

n Explain in simple ways how cancer develops. 

n Read a children’s book together that talks about having a loved one with cancer. 

n Ask a doctor or nurse to explain the facts. 

If your children feel angry or resentful that their own lives are affected: 

(for example, having to be quiet, doing 

more chores, missing out on fun activities 

with friends) 

n Validate their feelings. Talk with 

them about what’s causing the anger. 

Even though you may know that the 

anger comes from fear or fatigue, it’s 

important to listen to what they say 

and acknowledge their feelings.

n Help your children understand that 

their anger may be a stand-in for 

something else. Maybe they’re really 

angry at the cancer or at the family. 

Maybe they’re scared or worried. 

Or maybe they’re sad. 

n Do your best to try not to get angry back at them. Again, the anger is probably about 

something else.

If your children start to rebel or get into trouble: 

n Tell your children that you understand how they feel. You know that this situation 

is hard. 

n Find out if they are acting out of fear, anger, loneliness, or boredom. Whatever the 

feeling, remind them that it is okay to feel that way. But it is not okay to act out in 

this way. If necessary, ask a teacher, pediatrician, or counselor for advice and support. 
28

Tips for Talking With Children of Different Ages

Youngest Children (2–5 years old)

n Plan to talk for a very short time. Children this age can 

focus only for brief periods.

n Be clear and simple. It may help to draw a picture of what 

is happening.

n Tell them about any changes in their routine for the day 

or in the near future. 

n Offer to answer any questions and to talk any time.

Young Children (6–9 years old)

n Plan to talk for a short time. Children this age can focus only for brief periods. Plan 

more than one talk to cover what you need to say.

n Remember that young children may have strong feelings. They may express them by 

focusing on something else during your talk. This is okay. It allows them to deal with 

information and feelings at their own pace.

n Use examples. You could remind them of a time when they got sick and went to a 

doctor to get better. 

n Help them to understand the things 

that will be happening soon. Children 

this age can’t think weeks or months 

into the future. 

n Let them know they will be taken care 

of and by whom.

n Answer all their questions. Invite 

them to talk more later. 

Pre-Teens (10–12 years old)

n Plan for a slightly longer talk. Let your children set the pace of the talk. 

n Find out what your children already know about cancer. Make sure that what 

they have heard applies to your loved one’s situation. If not, give them the 

right information. 

n Be aware that your children may ignore or avoid topics when they are afraid.
29

n Use simple, concrete information. For example, you could explain that there is a lump 

in your loved one’s body that needs to be removed. 

n Talk not only about now, but also 

about the future. For example, 

tell them how the cancer may 

affect your family at holidays or 

upcoming events. 

n Tell your children you will 

do your best to answer their 

questions. Let them know you’re 

there to talk whenever they want.

Teens (13–18 years old)

n You may be able to have a longer talk. Let your teens set the pace.

n Be prepared if your teens try to ignore or avoid topics. Teens may act this way because 

they’re afraid or even embarrassed. They may not want to talk about your loved one’s 

body. This may be especially true if your loved one’s cancer is in the breast or sex organs. 

n Teens often need time to themselves to deal with their feelings. They may want to be 

alone or with friends. Give them this time.

n Teens should be told the facts about the cancer. This can help you correct any wrong 

information that they may have. Give your teens booklets or Web sites to read later. 

They may want to do their own research. If so, make sure that what they learn is from 

a reliable source and applies to your loved one’s situation. 

n Often teens ask many “what if” 

questions. They may want to know more 

about the future. Again, answer their 

questions as best you can. And let them 

know you’ll be glad to talk again later. 

n Teens may also want to know how the 

cancer will affect them. Will it disrupt 

their social life? Will they have to do 

more chores? This is normal. Be honest 

with them.
30

Communicating with Your Partner with Cancer

Some relationships get stronger during cancer treatment. 

Others are weakened. Nearly all caregivers and their 

partners feel more stress than usual as a couple. They 

often feel stress about:

n Knowing how to best support each other 

n Dealing with new feelings that come up

n Figuring out how to communicate

n Making decisions

n Changing roles

n Juggling lots of roles (such as child care, housekeeping, work, and caregiving) 

n Changing their social life

n Changing their daily routine

n Not feeling connected sexually

People express their emotions differently. Some like to talk things out or focus on others. And 

some prefer to express emotions by doing things, such as washing the dishes or fixing things 

around the house. They may be more likely to focus inward. These differences can cause tension 

because each person may expect the other to act the way they would in their place. To reduce 

stress, it may help to remind yourself that everyone reacts differently.

Bringing Up Hard Topics with Your Loved One

Bringing up tough subjects is emotionally draining. You may think, for example, that your 

loved one needs to try a different treatment or doctor. Or she may be worrying about losing 

independence, being seen as weak, or about being a burden to you, but doesn’t want to talk 

about it. Here are some tips on how to bring up hard topics:

n Practice what you’ll say in advance.

n Know that your loved one may not want to hear what you have to say.

n Find a quiet time and ask if it’s okay to talk.

n Be clear on what your aims are. (Let your loved one know why you are having this talk and 

what you hope will come from it.)

n Speak from your heart. 

n Allow time for your loved one to talk. Listen and try not to interrupt.

n Don’t feel the need to settle things in one talk.

n You don’t have to always say, “It’ll be okay.”

“I try to give my 

husband time to think 

things through. Not 

to be so quick to try 

and fix everything.” 

—Pauline
31

Sometimes the best way to communicate with someone is to just listen. This is a way of 

showing that you are there for them. It may be one of the most valuable things you can do. 

And it’s important to be supportive to whatever your loved one wants to say. It’s her life and her 

cancer. People need to process their thoughts and fears in their own time and in their own way. 

You could also ask whether she is willing to think about the issue and talk another time. Your 

loved one may even prefer to talk with someone else about the topic.

Some people won’t start a conversation themselves, but may respond if you begin first. Here are 

some ways caregivers do this:

n “I know this is hard to talk about, but know that I’m ready to listen or to talk any time.”

n “I feel that it would be helpful to talk about how your treatment is going so far and how 

we’re both coping with it. Would you be willing to talk with me about that sometime 

this week?”

Sometimes it helps to ask other caregivers how they talk to their loved one with cancer, or others 

close to them. For example, you may want to ask:

n How do you keep another person’s feelings in mind when you’re coping with so many 

feelings of your own?

n How do you talk about tough topics and still stay supportive? 

If you continue to have trouble talking about the cancer and painful issues, you could ask for 

professional advice. A mental health expert may be able to help you explore issues that you don’t 

feel you can yourselves. But if your loved one doesn’t want to go with you, you can always make 

an appointment to go by yourself. You may pick up some ideas for how to bring up these topics, 

and talk about other feelings that you are coping with right now. 

Ways to Improve Communication

Some couples find it easier to talk about serious issues than other couples. Only you and your 

partner know how you communicate. The sections below may help you think about ways to 

address sensitive issues that work for both of you. 

Be Open About Stress

Some things that cause stress for you and your partner 

can’t be solved right now. Sometimes talking about 

these things can be helpful. You may want to say up 

front, “I know we can’t solve this today. But I’d like to 

just talk about how it’s going and how we’re feeling.” 

“I’ve noticed that my 

husband tries to stay 

really positive with 

everyone else, even his 

parents. He’ll say he’s 

feeling and doing great. 

This is frustrating for 

me because at home, 

I see that he isn’t.” 

—Emily
32

Topics to explore may include how each of you: 

n Deals with change and the unknown

n Feels about being a caregiver or being cared for

n Handles changing roles in your relationship 

or home

n Wants to connect with one another

n Sees what issues may be straining the relationship

n Feels, or would like to feel, cared for and 

appreciated

n Feels thankful for the other person

Become a Team

You and your partner may need to be a team now more than ever. It may help to think things 

through together: 

n Which decisions should you make together? 

n Which decisions should each of you make alone?

n What were some other tough times that you got through together? How is this situation 

similar or different?

n Which family tasks could you share?

n What kinds of tasks are easier for you? Which ones are harder?

n What does each of you need?

n How can others help? 

Find Ways to Say Thanks 

Perhaps your partner used to do a lot to keep 

your family going. And now, because he’s 

sick, you’re trying to get used to less help. It 

may be hard to notice the small things your 

partner is still doing to help out. There’s often 

too much going on. But when you can, try to 

look for these things, and thank your partner 

for doing them. Showing a little gratitude can 

make both of you feel better.

“I feel like it’s been such a 

blessing to be able to show 

my husband way beyond 

words how much I love him. 

And to see him fighting 

cancer because of his love 

for his life. It’s a privilege 

to be so closely involved in 

something of such value and 

importance.” —Rose Mary
33

Make Dates

Many couples find that it helps to plan special occasions. Some days may end up being better 

than others for these dates, depending on how your partner feels. So you may need to be okay 

with last-minute changes. 

Your dates don’t have to be fancy. It’s about spending time together. That can mean watching a 

video, going out to eat, or looking through old photos. It can be whatever you both like to do. 

You can also plan these dates to include other people, if you miss being around others.

Find Ways to Be Intimate 

You may find that you and your partner’s sex life is different than it used to be. Many things 

could be affecting it:

n Your partner is tired, in pain, or uncomfortable.

n You’re tired. 

n Your relationship feels distant or strained. 

n You or your partner may not be comfortable with the 

way your partner looks due to treatment.

n You may be afraid of hurting your partner.

n Your partner’s treatment might be affecting his or her interest in sex or ability to perform. 

You can still have an intimate relationship in spite of these issues. Intimacy isn’t just physical. It 

also involves feelings. Here are some ways to improve your intimate relationship:

n Talk about it. Choose a time when you and your partner can talk. Focus on just talking. Talk 

about how you can both renew your connection.

n Try not to judge. If your partner isn’t performing, try not to read meaning into it. Let your 

partner talk—or not talk—about what he or she needs.

n Make space. Protect your time together. Turn off the phone and TV. If needed, find someone 

to take care of the kids for a few hours.

n Take it slow. Reconnect. Plan an hour or so to be together without being physical. For 

example, you may want to listen to music or take a walk. This time is about reconnecting. 

n Try new touch. Cancer treatment or surgery can change your partner’s body. Areas where 

touch used to feel good may now be numb or painful. Some of these changes will go away. 

Some will stay. For now, you can figure out together what kinds of touch feel good, such as 

holding, hugging, and cuddling.

n Talk to a therapist or counselor. There are many who deal with intimacy and sexuality 

issues with cancer patients.

“After 42 years of 

marriage, there’s that 

bond that doesn’t need 

words.” —George
34

Communicating with Other 

Family Members and Friends

Any problems your family may have had before the 

cancer diagnosis are likely to be more intense now. This 

is true whether you’re caring for a young child, an adult 

child, a parent, or a spouse. Your caregiver role can often 

trigger feelings and role changes that affect your family in 

ways you never expected. And relatives you don’t know 

very well or who live far away may be present more often, 

too, which may complicate things. Some people have 

said that:

n Seeing your adult child ill can trigger feelings of 

needing to protect or help him or her.

“Watching my daughter go through cancer is really 

painful for me. I can’t stand not being able to help 

her. But they won’t let me help out. She and her 

husband like to handle things by themselves.” 

n Seeing your parent as someone who needs your help 

can be hard to accept. 

“My mother got cancer. Just like she nursed me 

back to health as a child, I wanted to do the same 

for her. Yet she’s used to doing everything herself. 

She keeps saying, ‘I’m still your mother.’” 

“I have my own life, with young kids to take care 

of, and a job. It’s hard trying to figure out how to 

help my dad.”

n Seeing an in-law or a friend’s parent worry or try to 

help out can feel like “too much.” 

“I need to run my own home. I know his mother 

just wants to help, but she’s too much in my 

business right now.”

Communication 

Troubles

Studies show that open and 

caring communication works 

best. Yet caregivers often 

run into:

n Tension from different ways 

of communicating

n Lack of sensitivity or 

understanding about 

appropriate ways to talk 

and share feelings

n People who don’t know 

what to say, won’t 

communicate at all, or 

won’t be honest
35

Hold a Family Meeting

Sometimes other close family and friends may not 

agree on what should be done. It’s very common 

for families to argue over treatment options. Or 

they argue because some caregivers help more 

than others. While everyone may be trying to do 

what they think is best for your loved one, family 

members may disagree about what this means. 

Everyone brings their own set of beliefs and values 

to the table, which makes decisions hard. It is often 

during these times that families ask their health care 

team to hold a family meeting. 

Talk with your loved one to see if she wants a family 

meeting. Ask if she would like to be involved. At the 

meeting, all members share as much information as 

they can. You can ask a social worker or counselor to be there, if needed. If you need to, you can 

bring a list of issues to discuss. Meetings can be used to: 

n Have the health care team explain the goals for treatment

n Let the family state their wishes for care

n Give everyone an open forum in which to express their feelings

n Clarify caregiving tasks

During these meetings, family members may want to talk about how they feel. Or they may want 

to talk about what kind of help they can give to the patient. Each person may have certain skills 

to offer. 

At the end of the meeting, ask the health care team to summarize and help plan the next steps. 

Choose the Right Time

Sometimes when one person feels like talking about important things, the other person doesn’t. 

Try choosing a time when you and the person you want to talk to won’t be doing other things. 

Find a quiet place, turn off the TV, and don’t answer the phone.

Keep People Updated

Often, you will be the main person updating family, friends, and coworkers about how the 

patient is doing. Ask your loved one what he wants to share, with whom, and when. If this is a 

task that someone else can do, select a “point person.” This person can make phone calls or send 

e-mail or letters to update others. Or if you’ve created a Web site to keep others informed about 

your loved one, they can update that as well. It’s important to let others who care know whether 

your loved one likes getting cards, calls, or visits.

“You do want to stay 

positive and upbeat. But 

at the same time, I feel 

like you want to share 

your reality with other 

people in your family so 

that they can know how 

to support you and how 

not to be shocked if things 

get worse.”—Maya
36

How to Communicate When Support Isn’t Useful

If people offer help that you don’t need or want, thank them for their concern. Let them know 

you’ll contact them if you need anything. You can tell them that it always helps to send cards 

and letters. Or they can pray or send good thoughts. 

Sometimes people offer unwanted advice on parenting, medical care, or any number of issues. It 

can be unpleasant to hear such comments. For example, some caregivers have shared:

n “We have a problem with a member of my husband’s family. She doesn’t live here and 

keeps questioning all our decisions. It’s gotten so bad that we’ve had our doctor explain 

to her that she’s not here all day, and, therefore, doesn’t understand the situation. She has 

been a real pain.” 

n “I feel like people really want him to do the treatment they are suggesting, rather than 

what we feel is best. It’s making this harder than it needs to be.” 

People often offer unwanted advice because they aren’t sure what else they can do. They may feel 

helpless to do anything, yet want to show their concern. While it may come from a good place, 

it can still seem judgmental to you.

It’s your decision on how to deal with these 

opinions. You don’t have to respond at all if you 

don’t want to. If someone has concerns about your 

kids that seem valid, talk to a counselor or teacher 

about what steps to take. Or if the concerns are 

about your loved one, you can talk to the medical 

team. Otherwise, thank them. And reassure them 

that you are taking the necessary steps to get your 

loved one and family through this tough time.

“My mother came by 

and commented on how 

much television the kids 

were watching. She made 

some remark about how 

she knew I was stressed, 

but could I find something 

better for them to do? 

I told her I’ve got a lot on 

my mind, and I needed 

her understanding.” 

—Carrie
37

Life Planning

It’s common to feel sad, angry, or worried that your lifestyle may change because of your loved 

one’s cancer. You may have to make major decisions that will affect your job or your finances. 

Finding ways to cope with these issues can bring some peace of mind.

Facing Fertility Issues

Some people are concerned about the effects of cancer treatment on their ability to have 

children. If this is true for you and your loved one, talk to the doctor before starting treatment. 

You may want to ask about options for protecting your fertility. Or the doctor can recommend a 

counselor or fertility specialist. This person can discuss available options and help you and your 

loved one make informed choices. (For more information, call Fertile Hope at 1-888-994-HOPE, 

or go to www.fertilehope.org.)

Handling Money Worries

The financial challenges that people with cancer and their families face are very real. During 

an illness, you may find it’s hard to have enough time or energy to review your options. Yet it’s 

important to keep your family financially healthy.

For hospital bills, you or your loved one may want to talk with a hospital financial counselor. You 

may be able to work out a monthly payment plan or even get a reduced rate. You also should stay 

in touch with the insurance company to make sure certain treatment costs are covered. 

For information about resources that are available, see the Resources section on page 42. You can 

also get the NCI fact sheet, “Resources for Financial Assistance for Patients and Their Families,” 

at www.cancer.gov, by searching for the 

terms “financial assistance.” Or call toll-free 

1-800-4-CANCER (1-800-422-6237) to ask 

for a free copy.

“I’m not working for the 

money. I’m working for 

the benefits. If we don’t 

have benefits, we could 

lose everything.” —Philip
38

Handling Work Issues

One of the greatest sources of strain for some caregivers is 

trying to balance work demands with providing care and 

support to a loved one. Caregiving can have effects on 

your work life in many ways, such as these:

n Causing mood swings that leave coworkers confused 

or reluctant to work with you

n Making you distracted or less productive 

n Causing you to be late or call in sick because 

of the stress 

n Creating pressure from being the sole provider for your family if your spouse or partner 

is not able to work

n Creating pressure to keep working, even though retirement may have been approaching

It’s a good idea to learn more about your company’s rules and policies related to a family 

member’s illness. See if there are any support programs for employees. Many companies have 

employee assistance programs with work-life counselors for you to talk to. Some companies have 

eldercare policies or other employee benefit programs that can help support you. Your employer 

may let you use your paid sick leave to take care of your loved one. Or they may let you take 

leave without pay. 

If your employer doesn’t have any policies in place, you could try to arrange something 

informally. Examples include flex-time, shift-exchanging, adjusting your schedule, or 

telecommuting as needed.

The Family and Medical Leave Act may apply to your situation. Covered employers must give 

eligible employees up to 12 work weeks of unpaid leave during a 12-month period to care for 

an immediate family member with a serious health condition. Visit www.dol.gov/esa/whd/fmla 

for more information. For sources of support, see the Resources section on page 42.

Looking at Living Arrangements

Sometimes treatment raises questions about living arrangements. When making these decisions, 

you should ask: 

n What kind of help does your loved one need, and for how long? 

n Could you remodel the house or move to a smaller or different one? 

n Is it risky for your loved one to be home alone? 

“A lot of times I come 

home from being at the 

hospital with no sleep 

and then have to go to 

work the next morning. 

It’s very tiring.” —Betsy
39

You’ll also need to consider how your loved one 

feels. She may fear:

n Losing her independence

n Being seen as weak or a burden to you 

and others

n Moving to a health care or other type of 

assisted living facility

These are tough issues. Sometimes it’s easier to 

consider a change in living arrangements when 

the advice comes from a health care professional. 

Social workers, doctors, nurses, home care 

providers, and agencies that work with older 

adults may be able to help you talk to your 

loved one.

Preparing Advance Directives 

If you have not done so already, it’s important to 

start talking with your loved one about advance 

directives. Advance directives are legal papers 

that tell the doctors what to do if your loved one 

can’t tell them himself. The papers let the patient 

decide ahead of time how he wants to be treated, 

stating his wishes for care. These decisions can 

seem overwhelming. But patients should keep 

in mind that avoiding these decisions when 

they are well will only place a heavier burden on 

them and their loved ones later on. Even if your 

loved one has a good prognosis, he should fill out 

advance directives. These may include a living 

will and a durable power of attorney.

Legal Papers 

At-A-Glance

Advance directives:

n A living will lets people know 

what kind of medical care 

patients want if they are unable 

to speak for themselves.

n A durable power of attorney 

for health care names a person 

to make medical decisions for a 

patient if he or she can’t make 

them. This person, chosen by 

the patient, is called a health 

care proxy.

Other legal papers that are not 

part of the advance directives:

n A will tells how a person wants 

to divide money and property 

among his or her heirs. (Heirs 

are usually the surviving family 

members. Other people may 

also be named as heirs in a will.)

n Power of attorney appoints 

a person to make financial 

decisions for the patient when 

he or she can’t make them.

Note: A lawyer does not always 

need to be present when you 

fill out these papers. However, a 

notary public may be needed. 

Each state has its own laws about 

advance directives. Check with a 

lawyer or social worker about the 

laws in your state. (For more, see 

the Resources on page 42.)

“My husband and I sat down 

together as he filled out his living 

will. We made sure we were in 

agreement with one another. It 

relieves me of a lot of guilt I could 

have had.” —Alma
40

Reflection

As a caregiver, you try to strike a balance each day. You have to care for your loved one while 

keeping up with the demands of family and work. Your focus tends to be on the patient’s needs. 

But it’s also up to you to try to stay in tune with yourself. Remember the things you need to 

maintain a healthy mind, body, and spirit. And, if you can, try to find a quiet time for reflection 

each day. Meditating, praying, or just resting may help you keep a sense of peace at this time.

Whether good or bad, life-changing situations often give people the chance to grow, learn, and 

appreciate what’s important to them. Many people who care for someone with cancer describe 

the experience as a personal journey. They say it has changed them forever. This is much like the 

way people with cancer describe their experience. It’s not necessarily a journey that caregivers 

would have chosen for themselves. But they can use their skills, strength, and talents to support 

their loved one while finding out more about themselves along the way.

“If you find it in your heart 

to care for somebody else, 

you will have succeeded.” 

—Maya Angelou
41

Caregiver’s Bill of Rights

I have the right to take care of myself. This is not 

an act of selfishness. It will give me the ability to take 

better care of my loved one.

I have the right to seek help from others even 

though my loved one may object. I know the limits 

of my own endurance and strength.

I have the right to maintain parts of my own life

that do not include the person I care for just as if 

he was healthy. I know that I do everything that I 

reasonably can do for this person. I have the right to 

do some things just for myself.

I have the right to get angry, be depressed, and 

express difficult feelings once in a while.

I have the right to reject any attempt by my loved 

one to make me do things out of guilt or anger. (It 

doesn’t matter if she knows they are doing it or not.) 

I have the right to get considerations, affection, 

forgiveness, and acceptance for what I do for my 

loved one, as I offer these in return.

I have the right to take pride in what I’m doing. 

And I have the right to applaud the courage it has 

taken to meet the needs of my loved one.

I have the right to protect my individuality. I also 

have the right to a life that will sustain me when my 

loved one no longer needs my full-time help.

(Author unknown)
42

Resources

Cancer Information 

and Support

Federal Resources

n National Cancer Institute 

Provides current information on cancer prevention, screening, diagnosis, treatment, 

genetics, and supportive care. 

Visit..................www.cancer.gov 

Cancer Information Service 

Answers questions about cancer, clinical trials, and cancer-related services and helps 

users find information on the NCI Web site. Provides NCI printed materials.

Toll-free................... 1-800-4-CANCER (1-800-422-6237)

Visit............................www.cancer.gov/aboutnci/cis 

Chat online ...........Click on “LiveHelp” from the home page.

n Administration on Aging 

Provides information, assistance, individual counseling, organization of support groups, 

caregiver training, respite care, and supplemental services.

Phone..............1-202-619-0724

Visit..................www.aoa.gov 

n Centers for Medicare and Medicaid Services 

Provides information for consumers about patient rights, prescription drugs, and health 

insurance issues, including Medicare and Medicaid.

Toll-free.........1-800-MEDICARE (1-800-633-4227)

Visit..................www.medicare.gov (for Medicare information) or 

www.cms.hhs.gov (other information)

n Equal Employment Opportunity Commission 

Provides fact sheets about job discrimination, protections under the Americans With 

Disabilities Act, and employer responsibilities. Coordinates investigations of employment 

discrimination.

Toll-free.........1-800-669-4000

TTY...................1-800-669-6820

Visit..................www.eeoc.gov

For more resources:

See National Organizations That Offer

Cancer-Related Services at www.cancer.gov. 

In the search box, type in the words 

“national organizations.” 

Or call 1-800-4-CANCER (1-800-422-6237) 

to seek more help.
43

n National Association of Area Agencies on Aging

Eldercare Locator

The Eldercare Locator is a nationwide directory assistance service designed to help 

older persons and caregivers find local resources for support. Areas of support include 

transportation, meals, home care, housing alternatives, legal issues, and social activities.

Toll-free.........1-800-677-1116

Visit..................www.eldercare.gov

n U.S. Department of Labor 

Office of Disability Employment Policy 

Provides fact sheets on a variety of disability issues, including discrimination, workplace 

accommodation, and legal rights.

Toll-free.........1-866-ODEP-DOL (1-866-633-7365)

TTY...................1-877-889-5627

Visit..................www.dol.gov/odep 

Non-Profit Organizations

n American Cancer Society (ACS)

Mission is to end cancer as a major health problem through prevention, saving lives, and 

relieving suffering. ACS works toward these goals through research, education, advocacy, 

and service. The organization’s National Cancer Information Center answers questions 24 

hours a day, 7 days a week.

Toll-free.........1-800-ACS-2345 (1-800-227-2345)

TTY...................1-866-228-4327

Visit..................www.cancer.org

n American Pain Foundation

Serves people with pain through information, advocacy, and support; pain and resource 

information, practical help and publications are available through toll-free telephone service 

and website.

Toll-free.........1-888-615-PAIN (1-888-615-7246)

Visit..................www.painfoundation.org

n CancerCare 

Offers free support, information, financial assistance, and practical help to people with 

cancer and their loved ones.

Toll-free.........1-800-813-HOPE (1-800-813-4673)

Visit..................www.cancercare.org

n Cancer Support Community

The CSC is dedicated to providing support, education, and hope to people affected 

by cancer. 

Toll-free ........1-888-793-9355

Web site.........www.cancersupportcommunity.org
44

n Fertile Hope

Fertile Hope provides reproductive information, support, and hope to cancer patients who 

are at risk for treatment-related infertility.

Toll-free.........1-888-794-HOPE (4673)

Visit..................www.fertilehope.org

n Lance Armstrong Foundation

The Lance Armstrong Foundation seeks to inspire and empower people living with, through, 

and beyond cancer to live strong. It provides education, advocacy, and public health and 

research programs.

Phone..............1-512-236-8820 (general number)

Toll-free.........1-866-235-7205 (LIVESTRONG SurvivorCare program)

Visit..................www.livestrong.org

n NeedyMeds

Lists medicine assistance programs available from drug companies. 

NOTE: Usually patients cannot apply directly to these programs. Ask your doctor, nurse, or 

social worker to contact them.

Visit..................www.needymeds.com

n National Coalition for Cancer Survivorship (NCCS)

Gives out information on cancer support, employment, financial and legal issues, advocacy, 

and related issues.

Toll-free.........1-877-NCCS-YES (1-877-622-7937)

Visit..................www.canceradvocacy.org

n National Family Caregivers Association (NFCA)

NFCA provides information, education, support, public awareness, and advocacy 

for caregivers.

Toll-free.........1-800-896-3650

Visit..................www.nfcacares.org

n Patient Advocate Foundation

Offers education, legal counseling, and referrals concerning managed care, insurance, 

financial issues, job discrimination, and debt crisis matters.

Toll-free.........1-800-532-5274

Visit..................www.patientadvocate.org

n The Well Spouse Foundation

The foundation provides support to wives, husbands, and partners of chronically ill and/or 

disabled persons.

Toll-free.........1-800-838-0879

Visit..................www.wellspouse.org

NIH Publication No. 10-5726

Printed September 2010