Support for Caregivers

When Someone 

You Love Has 

Advanced 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 has 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 online from the National 

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

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

website (http://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 

Has Advanced Cancer

“If there’s one thing 

that’s come out of taking care of someone, 

it’s that I’ve learned what’s important 

really fast. And it’s a lesson 

I’ll carry forever.”

—Maureen
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. 

Or you may decide that you would rather read a 

different booklet right now (see below).

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 printed from 

the NCI website are: 

■ Facing Forward: When Someone You Love Has Completed 

Cancer Treatment 

■ When Someone You Love Is Being Treated for Cancer 

■ Children with Cancer: A Guide 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

Overview ........................................................................................1

Helping Your Loved One Cope With Advanced Cancer ...............2

Working With the Health Care Team ...........................................9

Getting Support ...........................................................................13

Life Planning ................................................................................17

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

Caring for Yourself .......................................................................33

Reflection .....................................................................................46

Caregiver’s Bill of Rights .............................................................47

Personal Affairs Worksheet ..........................................................48

Signs That Death Is Near and What You Can Do .......................52

Resources ......................................................................................53

1

Overview

Is This Booklet for Me?

This booklet is for you if your loved one has been told that 

he or she has advanced cancer that is no longer responding 

to treatment. It explores many of the questions and 

crossroads you may be facing now. 

Until now, you have probably gone through cancer 

treatment with your loved one hoping for a remission or 

recovery. If your health care team is telling you that this 

may not be possible, you may be facing new choices to 

make about care and future steps. 

Making these transitions in care can be hard. You’ll need to focus on the things you can control 

and what you can do to make this time with your loved one special. You’ll want to help the 

patient live life to the fullest. Many caregivers say that this time gave their life special meaning 

and a sense of what’s important. 

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.

Who Is a Caregiver?

If you are helping someone you love during cancer care, you are a “caregiver.” You may not think 

of yourself as a caregiver. You may look at what you’re doing as something natural—taking care 

of someone you love. 

There are different types of caregivers. Some are family members. 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 happen long-distance, when you are coordinating care and services by phone or 

email. 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.

During this time, the natural r esponse 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 little while. 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 take care of you.
2

Helping Your Loved One 

Cope With Advanced Cancer

Your loved one may be struggling with advanced cancer 

or with a cancer recurrence. Doctors may be saying that 

the cancer isn’t responding to treatment. You may have 

been told that long-term remission isn’t likely. Or your 

loved one may have decided to discontinue treatment 

and live out his or her days to the fullest.

This may be a time when new decisions need to be made. 

Shifts in care may be needed or may already be taking 

place. The burden of making these decisions together may 

seem much heavier than it used to be. These choices often 

come with many emotions, such as sadness, anger, and the 

fear of the unknown. They may also come with questions 

about how much longer your loved one will live. 

Thinking or talking about these issues may feel like you’re giving up. But you aren’t. It doesn’t 

mean giving up hope. People usually cope better when they have different options. Having 

information about how to deal with tough situations will help. Your loved one still deserves good 

medical care and support from the health care team even if the treatment changes. 

“When you’re taking care 

of somebody, you’re so 

busy. For me, staying 

busy was very fulfilling. 

But then, when it began 

to shift, I felt empty 

sometimes, wondering 

what to do next.” —Joe

Making Decisions Together

You may have been caring for the cancer patient for 

a short or a long time. Most likely, you’ll be very 

involved in helping make choices about next steps for 

care. Some of these choices 

may include: 

■ Treatment goals

■ When to use hospice care

■ Financial decisions

■ How to get support from family members

“I guess some people don’t 

want a lot of information 

because they aren’t sure 

they can handle what the 

possibilities are. But I don’t 

think you can really make 

a good decision without 

knowing everything. We had 

to ask a lot of questions, 

though, because we didn’t 

know all our options.” —Beth
3

When dealing with advanced cancer, people have different goals for their care. Some want to 

keep following more aggressive treatments. Others decide to choose other paths for care. You 

may wonder: “Have we done everything possible to treat the cancer, or should we try another 

treatment?” It’s natural to want to do all you can, but you should weigh these feelings against 

the positives and negatives for your loved one. 

“You really want to know if the 

treatment is worse than the 

illness. We’ve come to ask the 

question, what’s the quality of 

life after this? Is it worth being 

sick for 2 months if he’s got 

less than a year to live?” —Dan

Questions to ask: 

■ What’s the best we can hope for by trying 

another treatment? 

■ Is this treatment meant to ease side 

effects or slow the spread of cancer?

■ Is there a chance that a new treatment 

will be found while we try the old one?

■ What are the possible side effects and 

other downsides of the treatment? How 

likely are they? 

■ Are the possible rewards bigger than the possible drawbacks?

Asking these questions may help the patient decide whether to continue or begin more 

treatment. It’s best to work together on this process. It will help you figure out both of your 

needs and the needs of others close to you. 

It’s important to ask your health care team what to expect in the future. And it’s also important 

to be clear with them about how much information you and the patient want from them. 
4

Understanding Your Loved One’s Wishes

For many families, it’s important that your loved one be in charge of making decisions. But in 

some families and cultures, it’s common for the caregiver to make many of the decisions. And 

they may make them with or without the patient knowing. Or sometimes the patient wants the 

caregiver to make all the decisions. This may be hard, for many reasons: 

■ Your own stress may make it hard to decide.

■ Your ideas about how to move forward may differ from the ideas of other family members 

or friends.

■ The patient may have different beliefs about care than you or other loved ones.

■ The opinions of your health care team may differ from your loved one’s or yours. 

There may also come a time when you have to make 

decisions for your loved one because he can’t anymore. 

It’s important to get a sense of how he feels about this 

before it happens. How would he like to deal with it? 

This may mean letting go of some opinions that you 

have about treatment. (For example, you may want to 

keep your loved one alive, whatever it takes. But he 

may wish to stop receiving life-sustaining measures at 

a certain point.) Try to keep things in perspective by 

looking at the facts.

“I think some people, 

like me, want to know 

everything. I want 

no surprises. But my 

husband doesn’t want 

to know anything. 

We struggle with how 

to handle this issue.” 

—Dora
5

Palliative Care

All patients have a right to comfort and quality 

of life throughout their care. Care that makes 

patients feel better, but doesn’t treat the disease 

itself is often called palliative care. It includes 

treating or preventing cancer symptoms and side 

effects caused by treatment. Comfort care can also 

mean getting help with emotional and spiritual 

problems during and after cancer treatment. 

People once thought of palliative care as a way to comfort those dying of cancer. Doctors now offer 

this care to all cancer patients, beginning when the cancer is diagnosed. Palliative care can go on 

through treatment, survival, advanced disease, and the time when treatment no longer controls 

the cancer. Members of the health care team may be able to provide comfort care. But a palliative 

care specialist may be the best person to treat some problems. Ask the doctor or nurse if there is a 

specialist your loved one can see. 

Sometimes patients only 

want to focus on the 

cancer itself. Yet they can 

improve their quality of 

life with palliative care.

Choices for Care

There are a number of options for your loved one’s cancer care. These depend on the type of 

cancer and the patient’s goals for care. These options include:

■ Clinical trials (research studies)

■ Palliative radiation, chemotherapy, or surgery 

■ Hospice care 

■ Home care

Many patients choose more than one option. 

Your loved one should base her decision on the 

risks and benefits of available treatments as well 

as her own feelings about life and death. You 

should both ask all the questions you need to. 

If she chooses not to get any more active cancer 

treatment, it does not necessarily mean a quick 

decline and death. And she will continue to 

receive palliative care and made comfortable. 

The health care team can offer information and 

advice on treatment options. 

“We have to let patients and 

their family members truly 

understand that if they choose 

not to do chemo or some other 

aggressive therapy, there are 

other options where they will 

receive support, comfort care, 

and assistance from the health 

care team.” —Dr. Hauser
6

Clinical Trials 

Patients with advanced cancer may be offered the option to participate in early-phase clinical 

trials. These trials are designed to look at the safety of a new treatment and to identify the 

best dose.

The chance that the new treatment will benefit a patient in such a trial is low, but some 

patients join these trials because they have hope that the treatment may help slow the growth 

of their cancer. Another reason may be that they want to benefit future patients by taking 

part in a trial.

Clinical trials have both benefits and risks. Your doctor and the study doctors should fully 

explain these before you decide to join a trial.

Palliative Treatment 

Many of the same methods that are used to treat cancer, such as medicines and certain 

treatments, can also be used to reduce pain or other symptoms, and help a patient feel more 

comfortable. In advanced cancer, palliative treatment may be given to help a person feel better, 

even if it isn’t intended to treat the cancer. For example, doctors may give chemotherapy to 

slow the growth of a tumor that is causing pain. Or surgery may be performed to remove a 

mass that is pressing on certain nerves and causing pain.
7

Hospice Care 

Choosing hospice care doesn’t mean that you’ve 

given up. It means that the treatment goals are 

different now. It does not mean giving up hope, but 

rather changing what you hope for. 

The goal of hospice is to help patients live each day 

to the fullest by making them as comfortable and as 

symptom-free as possible. Hospice doctors, nurses, 

chaplains, social workers, and volunteers are specially 

trained. They are dedicated to supporting the 

emotional, social, and spiritual needs of both patients 

and their families, as well as dealing with patients’ 

medical symptoms. 

“I can’t say enough about 

our hospice nurse. We 

don’t need her all the time 

yet, but she’s here if we 

need help. She comes by 

or calls us to see if there’s 

anything she can do. She’s 

been a great source of 

comfort these past few 

months.” —Gail

Many people believe that hospice is only available in 

the last days or weeks of life. They don’t realize that 

hospice can provide support for much more than a few weeks. As a result, many caregivers have 

said that they wished they had gotten hospice involved sooner in the care process. They were 

surprised by the expert care and understanding that they got. Often, control of symptoms not 

only improves quality of life but also helps people live longer. Check with the hospice you are 

thinking of using to learn what treatments and services are covered. Also check with your loved 

one’s insurance company to see what it will cover.

People usually qualify for hospice services when their doctor signs a statement that says that 

patients with their type and stage of disease, on average, aren’t likely to survive beyond 6 

months. Patients will be reviewed periodically by the health care team to see whether hospice 

care is still right for them. Services may include: 

■ Doctor services 

■ Nursing care

■ Medical supplies and equipment

■ Drugs for managing cancer-related symptoms and pain

■ Short-term inpatient care

■ Homemaker and home health aide services

■ Respite services to give you a break from caring for your loved one

■ Counseling

■ Social work services

■ Spiritual care

■ Bereavement (grief) counseling and support

■ Volunteer services
8

No One Knows 

the Future

It’s normal for people to want to 

know how long their loved one 

will have to live. It’s also natural 

to want to prepare for what lies 

ahead. You may want to prepare 

emotionally too, as well as make 

certain arrangements and plans. 

But predicting how long 

someone will live is difficult. 

The doctor has to take into 

account the type of cancer, 

treatment, past illnesses, and 

other factors. Your loved one’s 

doctor may be able to give you 

an estimate. But keep in mind 

that it’s a guess. Every patient 

is different. 

Some patients live long past the 

time the doctor first predicted. 

Others live a shorter time. 

Also, an infection or other 

complication could happen and 

change things. Your loved one’s 

doctor may know the situation 

best. But even the doctor can’t 

know the answer for sure. 

And doctors don’t always feel 

comfortable trying to predict 

how long someone will live. 

In truth, none of us knows when 

we are going to die. Unexpected 

events happen every day. The 

best we can do is try to live fully 

and for today.

What to Expect with Hospice Care

People can get hospice services at home, in special 

facilities, in hospitals, and in nursing homes. Hospice care 

also provides visits by nursing 

assistants, social workers, and 

chaplains, as well as nurses on 

call 24 hours a day in case you 

need advice. And they have 

many volunteers who help 

families care for their loved 

one. Some hospice services will 

give palliative chemotherapy 

at home as well. Hospice care 

doesn’t seek to treat cancer. 

But it does treat curable 

problems with brief hospital 

stays if needed. Examples 

might be pneumonia or a 

bladder infection.

“I wish I’d found 

out earlier about 

hospice care. But 

you don’t know 

what you need 

at the beginning. 

And I didn’t realize 

they could help me 

sooner, rather than 

later.” —Bruce

Medicare, Medicaid, and most private insurance companies 

cover hospice services. For those without coverage and 

in financial need, many hospices provide care for free. To 

learn more about hospice care, call the National Hospice 

and Palliative Care Organization at 1-800-658-8898. Or 

visit the website at http://www.nhpco.org to find a hospice 

program in your community. 

Home Care

Home care services not only provide palliative care, but 

may treat the cancer itself. This is for people who get 

medical care at home rather than in a hospital. If the 

patient qualifies for home care services, they may include: 

■ Managing symptoms 

■ Monitoring care 

■ Physical and other therapies

■ Providing medical equipment

Your loved one may have to pay for home care services. 

Check with your insurance company. Medicare, Medicaid, 

and private insurance companies will sometimes cover 

home care services when ordered by the doctor. But some 

rules apply. So talk to a social worker and other members 

of the health care team to find out more about home care.
9

Working With the Health Care Team 

Your situation may be changing a lot now. It’s very important to keep asking questions. Some 

caregivers feel that they were given a lot of information early on, but not as much later. And 

learning all the unknowns of the different care and treatment options can be stressful. 

It’s important for you and your loved one to sit down with the health care team. You need to 

talk about future steps and what to expect. You may be afraid of what you might hear. But other 

caregivers have said that they felt reassured after learning their options. It made them able to 

plan ahead.

Some people with cancer want to know everything. Others let their caregivers make the 

decisions. Sometimes these differences are cultural. Other times they are personal. The patient, 

your family, and you should decide who will be the primary contact for the health care team.

Asking About Pain 

People who have their pain managed are able to focus on enjoying life. Caregivers often worry 

about their loved one being in pain. If they are preoccupied by pain, you may notice changes 

in their personality, such as being distant, not being able to sleep, or not being able to focus on 

daily activities they once enjoyed. 

Your loved one does not have to be in pain or in any discomfort. Some people assume that 

there will always be severe pain with cancer. This is not true. Pain can be managed throughout 

treatment. The key is to talk regularly with the health care team about pain and other symptoms. 

You may want to ask if there is a pain specialist on staff as well.

Sometimes people with cancer don’t want to 

talk to the health care team about their pain.

They worry that others 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 so used to pain, they 

forget what it’s like to live without it. The 

medical team should ask about pain levels, 

but it’s up to you and the patient to be open 

about any pain she is having. 

“It can be hard for me as a doctor, 

because many times I see patients 

who want to know everything. 

And then I have caregivers who 

don’t want me to tell the patient 

everything. Yet the reality is that 

the patients know their bodies—they 

know what’s going on. So sometimes 

I get a situation where everyone 

knows the truth but tries to keep 

it from the other person to protect 

them.” —Dr. Crawford
Your Loved One’s 

Eating 

It’s okay to offer your loved 

one food, but try not to 

pressure him to eat. We often 

think of eating well as bringing 

good health. But when people 

have advanced cancer, they 

may not have an appetite. 

Also, their bodies may need 

less food than in the past. Or, 

some people find it easier to 

eat smaller portions more 

often, rather than three full 

meals a day. 

Although giving food may 

be a way you feel you can 

nurture your loved one, it’s 

important for you to try not 

to force him to eat. There are a 

lot of changes going on in the 

body, and he needs to decide 

when he is hungry. Trust that 

he knows what is best for his 

body. If you are worried that 

your loved one isn’t eating 

enough or eating properly, 

ask the doctor or nurse for 

an opinion.

This is when it’s important for you to encourage her to 

speak up. Or you can speak up for her. Be honest with 

the doctor about pain and how it’s affecting her routine. 

It may take more than one talk to feel comfortable about 

the pain medicines given. Some caregivers worry that 

they will give their loved one too much medicine. This 

rarely happens, but it’s important for you to talk to the 

doctor about your fears and concerns.

Talk with the health care team about how to keep your 

loved one as comfortable as possible. Make sure to 

include any hospice staff you may have. There are drugs 

that can help treat pain. These drugs can also be adjusted 

or changed if they aren’t working or have unpleasant 

side effects. 

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

larger doses if the patient needs them. Addiction is not 

an issue in people with advanced cancer. Instead, they 

will help your loved one stay as comfortable as possible. 

People with a history of addiction will want to talk to 

their doctor about any concerns. For more information, 

see the NCI booklet, Pain Control (see inside cover).

10
11

Asking About Other Changes

Sometimes, as treatment continues, changes may take place in the person with cancer. These 

may be due to the side effects of treatment or the cancer itself. Or they may be caused by other 

drugs. Some caregivers have said that they wished they had known about these changes sooner. 

They wished they had known what to expect. 

“No one told us what 

steroids would do. My 

partner started to 

have mood swings all 

of a sudden. She’d get 

really angry at me for 

no reason. Her nurse 

told me later this was 

common when taking 

these drugs, but how 

was I supposed to know 

that?” —Pat

Changes may occur in: 

■ Looks

■ Personality or mood

■ Memory 

■ Sleep

■ Appetite or nutrition needs

The person you are caring for may or may not go 

through any of these changes. But you should ask the 

doctor whether you need to be aware of them. At the 

same time, ask what you can do about them if they 

happen. It will help you to know that these changes are 

normal, and give you ways to be prepared. 

Some caregivers who have lost their loved one say they 

wished they had known the signs that death is near. 

They say this would have helped them be less afraid or 

worried. A list of the most common signs is provided on page 52.

“I remember in the early 

days my mom had a lot of 

depression, and I thought it 

was because of her cancer. But 

it wasn’t—it was the drugs 

causing it. If I had known about 

that earlier, I could have dealt 

with it a lot better.” —Debbie
12

Know Your Rights

People can refuse treatment 

at any time. In some states, 

doctors also have the right to 

stop aggressive treatment that 

they don’t think is working. 

If your loved one will be in 

the hospital, make sure that 

her wishes for care are clear 

to you and to the hospital 

staff. You want the staff 

to know any measures she 

wants, or doesn’t want, taken 

if her condition changes. 

Sometimes this information is 

not in a patient’s chart. 

General Tips for Meeting With 

the Health Care Team

If you are going with the patient to medical visits, 

here are some general tips for meeting with the health 

care team:

■ Make a list of questions before each appointment.

■ Take notes. Or ask the doctor if it’s okay to use a 

tape recorder.

■ Get a phone number of someone to call with 

follow-up questions.

■ Keep a file or notebook of all the papers and test 

results. Make sure it’s taken to medical visits. 

■ Keep records or a diary of all the visits. List the 

drugs and tests your loved one has taken.

■ Keep a record of any upsetting symptoms or side 

effects. Note when and where they occur. 

■ Find out what to do in an emergency. This includes 

who to call, how to reach them, and where to go.
13

Getting Support

Knowing Your Strengths and Limits

You may be faced with new challenges and concerns now 

that your loved one has advanced cancer. If the illness has 

been going on for a long time, these challenges may wear you 

down even more. Many caregivers say that, looking back, they 

took on too much themselves. Or they wish they had asked 

for help sooner in sharing tasks or seeking support. Take an 

honest look at what you can and can’t do. What things are 

you good at? What do you need to do yourself? What tasks 

can you give to or share with others? Be willing to let go of 

things that others can do.

“You have to learn that 

if people offer, let them 

do something. Tell them 

what you need to have 

done, because they don’t 

know. You have to be 

willing to let go of your 

pride and let them help 

you.” —Lynn

Many people probably want to help but don’t know what 

you need or whether you want help. And as the cancer 

progresses, you may see changes in the support you get from 

others. For example:

■ People who have helped before may not help now.

■ Others who have helped before may want to help in new ways now.

■ People who haven’t helped before may start helping now. 

■ Agencies that couldn’t help before may offer services now. 

Why Getting Help Is Important

Many people don’t want support when they need it most, 

so it’s normal to feel this way. You may pull back from your 

regular social life and people in general. You may feel that it’s 

just too much work to ask for help. Some caregivers have said 

that more people helped them in the beginning. But as time 

went on, they felt abandoned.

Accepting help from others isn’t always easy. When tough 

things happen, some people tend to pull away. They think, 

“We can handle this on our own.” But things can get harder 

as your loved one continues to go 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.” They feel stretched to the point that they can’t do 

it anymore. As simple as it sounds, it’s good to remind others 

that you still need help.

“I have been the main 

caregiver the whole 

time. At first, we had 

emotional support from 

the church and friends 

and so on, but over time 

they have just faded 

off. I have been stressed 

beyond belief.” —Marion
14

Keeping a Balance 

with Visitors 

You may have many more people 

calling you or coming by to visit 

than ever before. Many caregivers 

say they feel very blessed when 

people show they care. Although 

you probably are very thankful for 

their love and support, there may 

be times when you need some 

space. It’s okay if you need time to 

yourself or just with your family. 

Some things you can do are:

■ Let your answering machine 

pick up the messages. 

■ Answer the phone in shifts. 

Take turns with family 

members or friends to be in 

charge of calls for a few hours.

■ Put a sign on the door of 

your home or hospital room 

thanking people for coming 

by, but let them know your 

loved one is resting. Leave 

room for a note if they want 

to write one.

■ Have a friend in your home 

handle visitors while you can 

be in another part of your 

home taking care of your 

own needs. 

■ Go to a place where you can’t 

be reached for a while. 

Remember that getting help for yourself can also help 

your loved one, as well as other friends and family.

■ You may stay healthier.

■ Your loved one may feel less guilty about all the 

things that you’re doing.

■ Some of your helpers may offer time and skills 

that you don’t have.

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

your family. The idea is to remove some tasks so 

that you can focus on those that you can do.

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

of your faith community, or counselor. Other people 

may be able to help you sort out your thoughts and 

feelings. They may also be able to help you find other 

ways to get support. 

“I was taking on way too much. 

When I finally asked, more people 

than I expected were more than 

willing to help.” —Laney
15

How Can Others Help You?

Many people want to help, but they don’t know what you need or how to offer help. It’s okay 

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

For instance, you may want someone to:

■ Help with household chores, including 

cooking, cleaning, shopping, yard work, 

and childcare or eldercare. 

■ Talk and share your feelings. 

■ Drive your loved one to appointments.

■ Pick up a child from school or activities.

■ Pick up a prescription.

■ Look up information you need.

■ Be the contact person and help keep others updated on your loved one.

“The people that I had 

thought would help me 

weren’t there. It was the ones 

that I really didn’t expect to 

help that were right there 

saying, ‘I’m here for you. 

What can I do?’” —Antoine

Who Can Help?

Think about people who can help you with tasks. Besides friends and family, think of all the 

people and groups you and your loved one know. Some examples are neighbors, coworkers, and 

members of your faith community. The hospital or cancer center may also be able to tell you 

about services they offer or give you a list of agencies to call. Social workers can also put you in 

touch with support services.

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 those you expected to help you. You might wonder why 

someone wouldn’t offer to help. Some common reasons are: 

■ People may be coping with their own problems. Or they may not have enough time.

■ People are afraid of cancer or may have already had a bad experience with cancer. They 

don’t want to get involved and feel that pain again.

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

■ 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.

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

If people aren’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.
16

Long-Distance Caregiving 

It can be really tough to be away from your loved one with cancer. You may feel like you’re 

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

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

Caregivers who live more than an hour away often rely on the telephone or email as their link. 

But assessing someone’s needs this way can be limiting. You know that you would rush to 

your loved one’s side for a true medical emergency. But other situations are harder to judge. 

When can you handle things by phone, and when do you need to be there in person?

Finding Contacts

Many caregivers say that it helps to explore both paid 

and volunteer support. Try to create a support network 

of people who live near your loved one. These should be 

people whom you could call day or night and count on 

in times of crisis. You may also want them to check in 

with your loved one from time to time. 

You could also look into volunteer visitors, adult daycare 

centers, or meal delivery. Local agencies on aging often 

list resources online. Checking the white and yellow 

pages in print or online is useful, too. Give your phone 

numbers to your loved one’s health care team and 

others for emergencies.

“My brother is getting 

worse—he had a bad 

reaction the other day. 

I felt so helpless since 

he was in Colorado and 

I was here in Georgia. 

I try to call when I can, 

but it’s so frustrating 

not knowing for sure 

what’s going on. I don’t 

like feeling so removed.” 

—Deondra

Other Tips

■ Ask a local family member or friend to update you daily by email. Or, consider creating a 

website to share news about your loved one’s condition and needs.

■ Talk to electronic or computer experts about other ways to connect with people. New 

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

■ 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.

■ 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.

■ 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.
17

Life Planning

It’s common to feel sad, angry, or worried about 

lifestyle changes that happen because of your loved 

one’s cancer. You may also be making major decisions 

that will affect your job or your finances. Finding ways 

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

“I’m not working for the 

money. I’m working for 

the benefits. If we don’t 

have benefits, we’d lose 

everything.” —Philip

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 should also 

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 53. 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.

Coping with Work Issues

One of the greatest sources of strain is trying to balance work demands with providing care and 

support. The stress of caregiving can have effects on your work life in many ways, such as:

■ Causing mood swings that leave coworkers confused or reluctant to work with you

■ Making you distracted or less productive

■ Causing you to be late or call in sick because of stress

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

unable to work

■ Creating pressure to keep working, even though retirement may have been approaching
18

It’s a good idea to check into your company’s rules and 

policies related to a loved one’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 with. 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 or leave without pay. 

If your employer doesn’t have any policies in place, you 

could try to arrange something informally. Examples 

include flex-time, switching shifts with coworkers, 

adjusting your schedule, or telecommuting as needed.

“A lot of times I come 

home from being at the 

hospital with no sleep 

and then have to get to 

work the next morning. 

It’s very tiring.” —Betsy

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 the U.S. Department of 

Labor website at www.dol.gov/esa/whd/fmla for more information. For sources of support, see 

the Resources section on page 53.

Looking at Living Arrangements

Sometimes questions are raised about whether a loved one should live alone or with someone 

else. When making these decisions, here are a few good questions to ask: 

■ What kind of help does your loved one need? 

■ Is it risky for her to live alone? 

■ How often will she need help? 

You’ll also need to consider how your loved one feels. She 

may fear:

■ Losing her independence

■ Being seen as weak or a burden to others

■ Moving to a health care or other type of assisted 

living facility

Sometimes it’s easier to consider a change in living 

arrangements when the advice comes from a health 

professional. Social workers, visiting nurses, those who 

work with older adults, and others, may be able to help 

you talk to your loved one.
19

Advance Directives

If you have not done so already, it’s important to start talking with your loved one about his 

wishes. There may come a time when he can’t tell the health care team what he needs. Some 

people prefer to let their doctor or family members make decisions for them. But often people 

with cancer feel better once their wishes are known. Talk with your loved one about what kind of 

care he wants. The more you know, the more prepared you’ll be. 

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. They 

may include a living will and a durable power of attorney.

■ A living will lets people know what kind of medical care patients want if they are unable 

to speak for themselves. 

■ A durable power of attorney for health care names a person to make medical decisions 

for a patient when she can’t make them herself. This person, chosen by the patient, is 

called a health care proxy. It should be a person she trusts to carry out her decisions 

and preferences. 

Setting up an advance directive is not the same as giving up. Making decisions now keeps the 

patient in control. This way, his wishes are known and can be followed. This can help everyone 

worry less about the future and live each day to the fullest. 

Make copies of your loved one’s advance directives for the health care team and the hospital 

medical records department. Keep one set for yourself. This will ensure that everyone knows 

his wishes.

A lawyer is not always needed to fill out these documents. But you may need a notary public. 

Each state has its own laws concerning living wills and durable powers of attorney. These laws 

can vary in important details. In some states, a living will or durable power of attorney signed in 

another state isn’t legal. Talk with a lawyer or social worker to get more details. Or look at your 

state’s government website. 

You and your loved one may have different opinions about the contents of the advance 

directives. You should share your opinions, but in the end, it’s his choice. If you both can’t agree, 

you may want to ask someone else to guide the conversation between you both. You might talk 

to a member of your faith community, a social worker, other people dealing with cancer, or a 

hospice worker.

Other Legal Papers

Here are some other legal papers that are not part of the advance directives:

■ A will tells how a person wants to divide money and property among heirs (survivors).

■ Legal power of attorney appoints a person to make financial decisions for the patient 

when he can’t make them.
20

A Checklist for 

Organizing Your 

Loved One’s Affairs

■ If your loved one can’t 

physically gather important 

papers, have her make a list of 

where you can find them.

■ Keep papers in a fireproof box 

or with a lawyer.

■ If your loved one keeps 

important papers in a safe 

deposit box, he should make 

sure that a trusted family 

member or friend has access 

to it.

■ Although original documents 

are needed for legal purposes, 

family members should have 

photocopies.

■ A worksheet of personal 

affairs is on page 48. You 

can use it as a guide to the 

types of papers your family 

will need. 

Other Planning

Careful planning may reduce the financial, legal, 

and emotional burden you may face if your loved 

one dies. For many people, it’s hard to bring up 

these subjects. But talking about them now can help 

you avoid problems later. 

Maybe you don’t feel comfortable bringing up the 

subject. Or maybe your family simply doesn’t talk 

about these things. In either case, seek help from a 

member of the health care team. They may be able 

to help your loved one and your family understand 

the importance of talking about these issues early.

■ Clearing up insurance issues. Contact the 

health insurance company if the patient 

decides to try a new treatment or get hospice 

care. Most insurance plans cover hospice. 

They also cover brief home visits from a 

nurse or home health aide several times a 

week. But it’s wise to ask in advance. This 

may prevent payment problems later.

■ Putting affairs in order. You can help your 

loved one by making sure that he organizes 

his records, insurance policies, documents, 

and instructions. He may want to call his 

bank to make sure that he has taken all the 

right steps. 

■ Talking about funeral wishes. Some people 

plan services that are celebrations. Others 

prefer more traditional services. You and 

your loved one may want to plan a funeral 

or memorial service together. It may help 

both of you to plan a ceremony that meets 

her desires and has her personal touch. 
21

Talking with Family and Friends

Talking about serious issues is never easy. It’s hard 

to face an uncertain future and the potential death 

of your loved one. Often people are uncomfortable 

talking about it, or just don’t know what to say. But 

you will need to talk to your loved one or others 

about a number of issues. These might include the 

seriousness of the cancer, preparing for the future, 

fears of death, or wishes at the end of life. 

Some families talk openly about things. Others 

don’t. There is no right or wrong way to 

communicate. But studies show that families who 

talk things out feel better about the care they get 

and the decisions they make. 

“My brother doesn’t want to 

make any decisions about his 

treatment. He has left it up 

to the rest of us and doesn’t 

want to know anything. So 

we just sit down with the 

doctor and go over all the 

options and try to do the 

best we can.” —Marcus

Talking with Your Loved One Who Has Advanced Cancer

It’s likely that you and your loved one are both having the same thoughts and fears about the 

end of life. It’s natural to want to protect each other. But talking about death does not cause 

someone to die. And keeping things to yourself doesn’t make them live longer. 

You and your loved one can still have hope for longer life or an unexpected recovery. But it’s also 

a good idea to talk about what’s happening and the fact that the future is uncertain. And keeping 

the truth from each other isn’t healthy. Avoiding important issues only makes them harder to 

deal with later. You may find that you both are thinking the same things. Or you may find you’re 

thinking very different things. This makes it all the more important to get them out in the open. 

Talking over your concerns can be very healing for all involved. 

Often the best way to communicate with someone 

is to just listen. This is one of the main ways of 

showing that you’re there for them. It may be 

one of the most valuable things you can do. And 

it’s important to be supportive of whatever your 

loved one wants to say. It’s his life and his cancer. 

He needs to process his thoughts and fears in his 

own time and his own way. You can always ask 

whether he is willing to think about the issue and 

talk another time. He may even prefer to talk to 

someone else about the topic.
22

Bringing Up Hard Topics

Bringing up challenging subjects is draining. You may 

think, for example, that your loved one needs to try 

a different treatment or see a different doctor. Or she 

may be worrying about losing independence, being 

seen as weak, or being a burden to you. 

“Ever since Audrey was 

diagnosed, we’ve danced 

around the subject. No 

one really wants to talk 

about the end. Now that 

her cancer has advanced, 

we really have no other 

choice. We have to discuss 

how she wishes to spend 

her final days. For our 

family, it’s the hardest 

thing in the world to do.” 

—Robert

What is important to remember is that your loved one 

has the right to choose how to live the rest of her life. 

Although you may have strong opinions about what 

she should do, the decision is hers to make. Here are 

some tips on how to bring up hard topics:

■ Practice what you’ll say in advance.

■ Find a quiet time. Ask if it’s an okay time 

to talk.

■ Be clear on what your aims are. What do you 

want as the result?

■ Speak from your heart. 

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

■ Don’t feel the need to settle things after one talk.

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

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

can ask other caregivers how they have handled hard topics.

“There was so much we wanted 

to say to John, but we didn’t 

know how to find the words. So 

a friend of ours who’s a nurse 

helped us set up an evening with 

the whole family in John’s room, 

and each of us told him how 

much we loved him. Having that 

time together with him meant so 

much to us.” —Kiesha
23

If you continue to have trouble talking about painful issues, 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, you can always make an appointment to go alone. You may 

hear some ideas for how to bring up these topics. You can also talk about other concerns and 

feelings that you are dealing with right now. 

Words to Try*

When You Think You Want to Say... Try This Instead:

Dad, you are going to be just fine. Dad, are there some things

that worry you?

Don’t talk like that! You can beat this! It must be hard to come to terms 

with all this.

I can’t see how anyone can help. We will be there for you always.

I just can’t talk about this. I am feeling a little overwhelmed 

right now. Can we take this up 

later tonight?

What do the doctors know? 

You might live forever.

Do you think the doctors are 

right? How does it seem to you?

Please don’t give up. I need you here. I need you here. I will miss you 

terribly. But we will get through 

somehow.

There has to be something more to do. Let’s be sure to get the best of 

medical treatments, but let’s be 

together when we have done all 

we can.

Don’t be glum. You’ll get well. It must be hard. Can I just sit 

with you for a while?

* From Lynn, J. and J. Harrold. 2011. Handbook for Mortals: Guidance for People Facing Serious Illness. Oxford University Press: New York, NY. 

Reprinted with permission.
Talking with Children and Teens

Children as young as 18 months begin to think about 

and understand the world around them. If someone 

close to them has advanced cancer, their world may 

be changing monthly, weekly, or daily. That’s why it’s 

important to be honest with them and prepare them 

each step of the way. Children need to be reassured that 

they will be taken care of no matter what happens. 

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 information, either. Experts say that 

telling children the truth about the cancer is better than 

leaving their imaginations free to worry about the worst. 

Although it’s a very hard chapter in a family’s life, 

children can continue to grow and learn during this 

time. Dealing with cancer honestly and openly can teach 

them how to handle uncertainty for the rest of their lives. 

Making the most of the present is an important lesson for 

everyone to learn. 

“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.

24
25

Keeping the Lines of Communication Open

Understand Your Children’s Actions and Feelings 

Children react to their loved one’s cancer in 

many different ways. They may:

■ Seem confused, scared, angry, lonely, 

or overwhelmed

■ Feel scared or unsure how to act when 

they see the treatment’s effects on 

the patient

■ Act clingy or miss all the attention 

they used to get

■ Feel responsible or guilty

■ Get angry if they’re asked to do more 

chores around the house

■ Get into trouble at school and neglect 

their homework

■ Have trouble eating, sleeping, 

keeping up with schoolwork, or 

relating to friends

■ Be angry that someone else is taking 

care of them now

No matter how your children are reacting, it’s usually easier to deal with their feelings before 

problems appear. If they don’t open up to you, they may prefer talking to someone outside the 

family, such as a trusted teacher or coach. If you notice changes or problems, you may want to 

ask for help from your pediatrician who knows your family already, the school counselor, a social 

worker or a child life specialist. Any of these may be able to suggest a mental health professional 

for your children, if needed. 

Other Behaviors

It’s normal for some children to show signs of regression. They may begin acting younger than 

their years, resuming behaviors that they had stopped, such as babytalk or bedwetting. Or they 

may lose skills they had mastered recently. This is usually a sign of stress. Regression indicates 

that your children need more attention. It’s a way for them to express their feelings and, in their 

own way, ask for support. Recognize that they are needier right now. Be patient as you work with 

them to get them back to their normal behavior. But don’t hesitate to seek help from a social 

worker or other professional if you need more advice or support. 
26

Try to Ask Open-Ended Questions 

For some families, talking about serious issues is very difficult. As challenging as it may be, 

not talking about it can be worse. Try to ask open-ended questions, instead of “yes” or “no” 

questions. Here are some ideas you might want to share with children of any age:

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

■ “Nothing you did caused the cancer. And there is nothing you can do to take it 

away either.” 

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

about all of us.”

■ “You can ask me anything anytime.”

■ “Are you okay talking with me about this? Or would you rather talk to Mrs. Jones 

at school?”

■ “It is okay to be upset, angry, scared, or sad about all this. You may feel lots of feelings 

throughout this time. You’ll probably feel happy sometimes, too. It’s okay to feel all 

those things.”

Encourage Your Children to Share Their Feelings and Questions 

Let children know they’re not alone, and it’s normal to have mixed emotions. Help them find 

ways to talk about their feelings. Young children may be able to show you how they’re feeling by 

playing with dolls or drawing pictures. Other forms of art can help older children express 

themselves. Keep encouraging them to ask questions throughout caregiving. 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. 

Find Moments to Connect 

Come up with new ways to connect. Make 

a point of tucking them in at bedtime, 

eating together, reading to them, talking 

on the phone or by email. Talk to them 

while you fold clothes or do the dishes. 

Have a set time when your children do 

homework while you do something else 

in the same room. Or take a walk together. 

Going to the grocery store can even be 

“together time.” Just 5 minutes alone with 

each child without interruptions can make 

a world of difference.
27

Find Others to Help Out 

It may be very hard to give your children the time and energy that you normally would. But 

despite what’s going on, they still need to follow a normal routine as much as possible. They 

need to bathe, eat, play, and spend time with others. Are your children close to another adult, 

such as a teacher, coach, or some other person? If so, maybe you can ask them to help you with 

your kids while you handle your extra responsibilities. 

You can also call on your own close friends to help out with some tasks, such as cooking dinner 

or taking the kids out for a pizza. These may be people your kids know well and are comfortable 

being with. You could ask others who don’t know them as well to help with smaller tasks, such 

as carpooling or bringing meals over. 

Talking with Teens 

Teens may ask very tough questions, or questions for 

which you don’t have answers. They may ask the “what 

if” questions and what cancer means for the future. 

As always, keep being honest with them. Even more 

important, listen to what they have to say. As with adults, 

sometimes it’s the listening that counts, not the words 

you speak to them.

Older children, especially teenagers, may feel 

uncomfortable sharing their feelings with you. 

They may try to ignore or avoid topics. Encourage them 

to talk with others. Also let them know that it’s okay if 

they don’t know what they’re feeling right now. Many 

older children also find comfort in just spending time 

together, without talking about the situation. Hugs and 

letting your children know that you understand can help.

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

Here are some things to keep in mind:

■ Teens are supposed to be starting to be more independent from their families. Cancer 

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

■ Teens may give off the message of “leave me alone” when they still need and want your 

attention and support.

■ Being a teen under normal circumstances is stressful. Some moods you see may have 

nothing to do with the family illness.

■ Teens want to feel “normal.” Make sure they have time for regular activities.

■ Keep the communication lines open and involve your teens in decisions as much as 

possible. Make sure they have a safe place to talk about what is going on in their life. If 

it’s hard for you to be on top of their activities and feelings right now, involve another 

responsible adult to be closely connected with your teens.
28

Preparing Children for Visits

If your children don’t live with the person who has cancer, it’s helpful to prepare them before 

they visit. The decision of whether or not to let them visit is up to you, your loved one, and 

perhaps other family members. However, children should have the choice about whether or not 

they want to go see the patient. If she is in a hospital or other facility, explain what the area and 

the room look like. Tell them who might be there and what they might see. Also explain gently if 

her physical condition or personality has changed. 

For a younger child, you might say something like this:

■ “Grandma is very sick. When you see her, she will be in bed. She may not have a lot of 

energy to play with you or talk as much. She may look a little different, too.”

■ “Mom may be sleeping while you’re there. Or she may be awake but won’t talk because 

she’s resting. But she’ll know and be happy that you’re there. She loves you!”

■ “Don’t worry if you’re visiting Uncle Bill and he says things that don’t make sense. 

Sometimes the medicine he takes makes him do that. If it happens, we can tell his doctor 

about it to make sure he’s okay.” 

Sometimes children don’t want to visit, or can’t for other reasons. In that case, there are other 

ways of showing they care. They can write a letter or do artwork. They can call the patient up or 

leave messages or songs on an answering machine. Encourage them to show love and support in 

any way they want.

Talking to Children About Death

Children deserve to be told the truth about a poor prognosis. Hiding the truth from them leaves 

them unprepared for the loved one’s death and can prolong the grief they will feel. And if you 

don’t talk about the loved one’s condition or don’t tell the truth about it, you risk your children 

having difficulty trusting others when they grow up. By including children in the family crisis, 

you can guide your children toward healthy ways of coping with what is happening and help 

them prepare for their impending loss in healing ways. 

Children of all ages may wonder about dying, life after death, and what happens to the body. 

It’s important to answer all their questions. If not, they may imagine things that are worse than 

reality. Let them know that everything is being done to keep their loved one comfortable. Tell 

them that you will keep them updated. And provide opportunities for them to say good-bye.

In order to answer these difficult life questions, you need to know your own views on these 

subjects. What are you hoping for? What do you think will happen? You can show them how 

to hope for the best while accepting and preparing for the likely outcome (of death). If you’re 

honest and up front, you are teaching them that death is a natural part of life. It shows them it’s 

okay to talk about it. It can also be a time for them to be reminded that they won’t be alone in 

their time of need. You will always be there for them. 

Counselors and oncology social workers can help you handle these questions, too. They may 

know of local or national programs that offer help to children in these situations. Or they may 

suggest books, videos, and websites that explore these topics. 
29

Communicating With Your Partner with Cancer

Some couples feel more comfortable talking about serious issues than others. Only you and your 

partner know how you feel about it. 

Some things that cause stress for you and your partner can’t be solved right now. But sometimes 

talking about them can be helpful. You may want to say something like this up front, “I know we 

can’t solve this today. But I’d like to just talk some about how it’s going and how we’re feeling.” 

Topics to explore may include how each person: 

■ Copes with change and the unknown

■ Feels about being a caregiver or being cared for

■ Handles changing roles in the relationship or home

■ Would like to be connected to one another

■ Sees what issues may be straining the relationship

■ Feels, or would like to feel, cared for and appreciated

■ Feels thankful for the other person

“I’ve noticed that my 

husband tries to stay really 

positive with everyone else, 

even his parents. He’ll say 

he’s doing great. This is 

frustrating for me because 

at home, I see that he 

isn’t.” —Emily

As your loved one becomes sicker, you may also want to share more practical issues. These may 

include which decisions you should share together, and which you should make alone. Along 

with this, you may want to talk about the different tasks you can each handle right now. 

Find Ways to Say Thanks 

Maybe 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. 

Often it doesn’t take much to put a bright spot in your loved one’s day. Bringing your partner a 

cool drink, giving him a card, or calling to check in can show him that you care. Showing a little 

gratitude can make both of you feel better.

Spend Time Together

Many couples find that it helps to plan special time 

together. Some days may be better than others, 

depending on how your partner feels. So you may need 

to be okay with last-minute changes. You 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 also can plan occasions to include other people, 

if you miss that.
30

Communication 

Troubles

Studies show that open and 

caring communication works 

best. Yet often caregivers 

run into:

■ Tension from different 

ways of communicating

■ Lack of sensitivity or 

understanding about 

appropriate ways to talk 

and share feelings

■ People who don’t know 

what to say, won’t 

communicate at all, or 

won’t be honest

Find Ways to Be Intimate

You may find that your sex life 

with your partner is different 

than it used to be. Many things 

could be affecting it:

■ Your partner is tired, in 

pain, or uncomfortable.

■ You’re tired. 

■ Your relationship feels 

distant or strained. 

■ You or your partner may 

not be comfortable with 

the way he or she looks.

■ You may be afraid of hurting your partner.

■ 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 keep your intimate relationship:

■ Talk about it. Choose a time when you both can talk. 

Focus on how you can renew your connection.

■ Try not to judge. If your partner isn’t performing, try 

not to read meaning into it. Let your partner tell you 

what he or she needs.

■ 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.

■ Reconnect. Plan an hour or so to be together without 

trying to have sex. For example, you may want to play 

special music or take a walk. Take it slow. This time is 

about reconnecting. 

■ 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. For now, you 

can figure out together what kind of touch feels good, 

such as holding, hugging, and cuddling.
31

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 are 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, which may complicate things.

It’s very common for families to argue over a number of things at this time. These might include: 

■ Treatment options for their loved one, or whether to continue treatment at all

■ When to use hospice care 

■ What treatment the patient desires

■ Feelings that some family members help more than others

While everyone may be trying to do what’s best for your loved one, some family members may 

disagree as to what this means. Everyone brings their own set of beliefs and values to the table, 

which makes these decisions hard. It is often during these times that families ask their health 

care team to hold a family meeting. 

Family Meetings 

“My sisters keep hoping for 

the magic bullet. I don’t 

know how to get them to 

understand how serious 

things are.” —Verdell

Family meetings are necessary throughout cancer 

care. They become even more important as cancer 

progresses. In a family meeting, the health care 

team and family meet to discuss care. You can ask 

a social worker or counselor to be there if needed. 

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

meeting. Ask if he would like to be involved. 

Meetings can be used to: 

■ Have the health care team explain the overall goals for care 

■ Let the family state their wishes for care

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

■ Clarify caregiving tasks

If you need to, bring a list of issues to discuss. At the end of the meeting, ask the health care 

team to summarize decisions and plan next steps. 
32

How to Communicate When Support Isn’t Useful

Sometimes people are eager to help you because they want to feel useful. But at times you may 

not need the support, or you may simply want to spend time alone with your sick loved one. 

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

that right now you have things under control, but you’ll contact them if you need anything. 

You can tell them that it always helps to send cards, letters, and emails. 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:

■ “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.” 

■ “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 couldn’t I find 

something better for them to do? I told her 

I’ve got a lot on my mind, and needed her 

understanding right now.” —Carrie
33

Caring for Yourself

Coping with Your Feelings

You’ve probably had a range of feelings as you care for 

your loved one. These emotions can be quite strong at 

times and less so at others. It takes a lot of energy to stay 

hopeful and cope with the ongoing waves of emotion. 

Now that the cancer has advanced, these feelings may be 

even more intense. 

“Some days I’m stressed 

beyond belief. Then other 

days I feel thankful for 

the time I have spent 

with my wife all these 

years. Then the next 

day, I feel angry that I 

have to juggle so much, 

and then I feel guilty for 

being angry. Basically, 

I never know how I’m 

going to feel one day to 

the next.” —Jim

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 are 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 them 

may keep other people from understanding your needs. 

Hope or Hopelessness

You may feel hope or hopelessness to different degrees throughout the cancer treatment. Your 

hopes and dreams change with time, and shift back and forth. Although remission may no 

longer be possible for your loved one, it’s okay to hope for other things. You can hope that you 

and your loved one experience comfort, peace, acceptance, and even joy in the days ahead. As a 

caregiver, these feelings of hope may help you get through the next 5 minutes or the next 5 days. 

Sadness or Worry

You may feel sad or worried as you watch your 

loved one struggle with cancer. You may be 

concerned with how he is coping with side effects 

or coping with fear. Or you may be worried about 

bills, your family, or ending up alone.

It’s okay to cry or express your feelings when you 

are alone or with a trusted friend. You don’t have 

to be upbeat all the time or pretend to be cheerful. 

Give yourself time to cope with the changes you 

and your loved one may be going through. 

“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
34

Anxiety or 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 things will affect the family, and, of course, how 

their loved one is coping. 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. It’s likely that your 

symptoms can be eased. See page 45 for some warning signs of depression.

Grief

Grief is the process of letting go and accepting and learning to live with loss. Part of the grieving 

process is feeling extreme sadness, as well as other feelings. You may feel sad about the losses 

you’ve experienced, including the loss of the life you used to have.

“I think there’s a great 

deal of preparation 

being done now, almost 

advanced bereavement. 

Sometimes I feel myself 

grieving her and she’s 

not even gone yet.” 

—Artie

But grieving doesn’t mean that you have to feel a certain 

way. Everyone is different. Let yourself grieve in your own 

way and time. For example, some people may not show as 

much emotion as others do when they grieve. They show 

their feelings by doing things, rather than talking about 

them. This doesn’t mean that they aren’t feeling “the 

right way” or that they need to change how they react. 

You may begin to feel the loss of your loved one even 

before he dies. This is called anticipatory grief. It’s normal 

to feel sad about the changes you are going through and 

the losses you are going to have. You may have expected 

your life with your friend or family member to be 

different than what you are going through. Feeling sad 

over what might have been or what is to come is 

expected. It’s normal for you to have grief over the future loss of your loved one and all the 

changes involved.

Understand that these feelings are normal. 

And grief can come up at times when you’re 

not expecting it. Although it can come 

and go in intensity, grief can last for many 

months. It’s important to seek help from 

hospice staff, a mental health expert, or a 

support group.
35

Hurt Feelings

You may be feeling more sensitive right now. Being 

tired and stressed can put you on edge more than 

usual. And because of this, your feelings may get 

hurt more easily. This could be because you feel 

like you’re not being helped enough. Or it could be 

that you feel people don’t understand how much 

you’re going through. However, one common cause 

of hurt feelings is when the person you’re caring 

for directs anger at you. She may feel stressed, 

tired, or scared, and in turn, take her anger out on 

you. Or sometimes medicine causes people to have 

more anger than they normally would. Try not to take this personally. Ask the doctor if anger 

is a side effect of medicine. You may also find it helpful to share your feelings with your loved 

one. Sometimes patients don’t realize the effect that their anger has on others. But most of all, 

remember that we often show our feelings, good or bad, to the people we love the most.

“It’s emotionally exhausting, 

and I never know what to 

expect. One minute, things 

are looking up, and a couple 

of hours later, something 

happens and I don’t have 

the answers.” —Beth

Anger

Many things are going on right now that can make you angry. You may be angry with yourself, 

your family, God, or even the person you’re caring for. At first, anger can help by moving you to 

take action. You may decide to learn more about different treatment options or get more medical 

opinions. But anger doesn’t help if you hold it in too long or take it out on others. 

It may help to pinpoint why you are angry. This isn’t always easy. Sometimes anger comes from 

feelings that are hard to show, such as fear, panic, or worry. Or it may come from resentment. If 

these feelings remain, seek help from a counselor or other mental health professional.

Loneliness

You can still 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 also may feel lonely 

because you have less time to see people and do the things you’re used to doing. Whatever your 

situation, you aren’t alone. Other caregivers know how you feel and share your feelings. See the 

Resources section on page 53 for resources you can use to connect with others.

Denial

You may have trouble accepting that your friend or family member may not recover. You may 

think that if she keeps getting treatment, something may finally work, or a new discovery will 

be made. There’s nothing wrong with this. But try to listen to your loved one and the doctor to 

really hear what they’re saying. Your way of coping may make the patient feel that you don’t 

really understand what’s happening. Again, it’s okay to deal with things at your own pace. But be 

aware of the effect this may have on others.
36

Caring for Your Mind and Spirit

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 39.) 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, riding a bike, 

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. 

Look for Positives

It can be hard finding positive moments when you’re busy caregiving. Caregivers say that 

looking for the good things in life helps them feel better. Each day, try to think about something 

that you find rewarding about caregiving. You also might 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. 

Find Acceptance 

You’re on your own path toward accepting the fact that your loved one may die. Although 

it may take time, acceptance can bring feelings of peace. You may find that cancer helps 

you value life more. You may feel that you live each day more fully, even though the future 

is unknown. 

“I have gotten a lot of 

patience from caregiving. 

I learned it’s okay for me 

to have all the feelings 

I’m having and for her 

to have all the ones she’s 

having. I see that we 

both go through a lot.” 

—Esther

Feel 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 or stress-free. 

But finding meaning in caregiving can make it easier 

to manage.
37

Connect with Other People

Studies show that connecting with other people is very important for most caregivers. It’s 

especially helpful when you feel overwhelmed. Sometimes you want to say things that you just 

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. Some caregivers have an informal network of 

people to contact. Some also see a counselor or a therapist. If you’re concerned about a 

caregiving issue, you may want to talk with your loved one’s health care team. Knowledge often 

helps reduce fears. 

Let Yourself Laugh

It’s okay to laugh, even if your loved one has 

advanced cancer. In fact, it’s healthy. Laughter 

releases tension and makes you feel better. You 

can read funny columns and comics, watch comedy 

shows, or talk with upbeat friends. Or remember 

funny things that have happened to you in the past. 

Keeping your sense of humor is a good coping skill. 

Write in a Journal 

Research shows that writing in a journal can relieve negative thoughts and feelings. It can also 

help improve your 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, or what went well that day. 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 gets all the “jumble” out of your mind and onto the paper.

Confront Your Anger or Frustration

You may find that you’re getting more 

and more angry and frustrated as the 

person you’re caring for gets sicker. It 

may help to try to process these feelings 

as they happen, rather than hold them 

in. Ask yourself what’s really causing 

the anger. Are you tired? Frustrated 

with medical care? Does your loved one 

seem demanding? If you can, try to let 

some time pass before bringing up your 

feelings. It may also help you to express 

your anger through exercise, art, or even 

hitting the bed with a pillow. 

“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
38

Let Go of Your Guilt 

If you are feeling guilty, here are some things you 

can do:

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

is. The best we can do is learn from our mistakes 

and move on. Continue to do the best you can. 

And try not to expect too much from yourself. 

■ 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 rest instead.

■ Forgive yourself and others. Chances are good 

that people are doing what they can. That 

includes you. Each new moment and new day gives you a chance to try again. 

“I get tired and angry 

because I run myself 

ragged all day. Then I feel 

guilty for feeling this way 

because I’m not the one 

who is sick. Some days, 

though, I just can’t help 

it. This can seem like a 

thankless job that I didn’t 

sign up for.” —Hao

Join a Support Group

Support groups can meet in person, by phone, or over the Internet. They may help you gain new 

insight into what’s happening, give you ideas about how to cope, and help you know that you’re 

not alone.

In a support group, people may talk about their feelings and what they have gone through. They 

may trade advice with each other and 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 feel like you would benefit from outside 

support such as this but can’t get to a group in your 

area, try a support group on the Internet. Some 

caregivers say websites with support groups have 

helped them a lot. 

“What I need at least 

once or twice a week is 

to talk to someone or a 

group of people that are 

in the same shoes as I 

am.” —Vince
39

Use Respite Help

Many caregivers say that they wish they had gotten 

respite help sooner. Some say that they waited out of 

pride or guilt. Others just didn’t think of it earlier.

Respite providers spend time with the patient so you can 

rest, see friends, run errands, or do whatever you’d like 

to do. Respite services can also help with the physical 

demands of caregiving, like lifting your loved one into 

bed or a chair. If this service sounds useful, you may 

want to:

■ Talk with your loved one about having someone 

come into your home to help out from time to 

time. If she seems to resist this request, you may 

want to ask a friend or family member to help 

explain why this could be good for both of you.

■ Get referrals from friends or health care 

professionals. Your local agency on aging 

should also have suggestions.

■ Ask the respite helpers what types of tasks 

they do.

You can get respite help from family, friends, neighbors, 

coworkers, members of your faith community, 

government agencies, or nonprofit groups. 

Whatever you do, remember that you 

haven’t failed as a caregiver if you need 

help and relief. 

“Since we’re taking care of 

Dad at home now, Mom and 

I take turns running each 

morning while the other 

person stays with him. It’s the 

only way I can keep my stress 

level down through all this.” 

—Meredith

Small Things 

I Can Do For Me

Each day, take a short 

vacation from caregiving:

■ Nap

■ Exercise

■ Keep up with a hobby

■ Take a drive

■ See a movie

■ Work in the yard

■ Go shopping

■ Catch up on phone calls, 

letters, or email
40

Making 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 no time left for yourself. Or you may feel guilty that you 

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

“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’s very tiring.” 

—Adele

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 47.)

Taking time to recharge your own body, mind, 

and spirit can help you be a better caregiver. And 

if you’re sick or not feeling well, it’s even more 

important that you take care of yourself, too. You 

may want to think about: 

■ Finding nice things you can do for 

yourself—even for a few minutes

■ Finding nice things others can do or set up 

for you 

■ Finding new ways to connect with friends

■ Taking larger chunks of time that are “off-duty”

Giving yourself an outlet to cope 

with your thoughts and feelings is 

important, too. Try to think about 

what would help give you a lift. 

Would talking with others help 

ease your load? Or is quiet time by 

yourself what you would like best? 

You might want some of both, 

depending on what’s going on in 

your life. It’s helpful to take the time 

to think about your own needs. 
41

Finding Meaning

Many caregivers find that the cancer experience 

causes them to look for meaning in their lives. 

Taking time to think about your life and your 

relationship with your loved one may help you feel a 

sense of closure, accomplishment, and meaning. You 

may want to share your thoughts with your loved 

one or others, or you may just want to write them 

down or tape-record them for yourself. 

“Before her cancer, 

I wasn’t living my life 

the way I should have. 

But when I got the 

opportunity to take care 

of my wife, I became 

really close to her. I’ve 

learned things about 

her I never knew. And 

we’ve become really 

close. I think about life 

differently, you know. I 

take it more seriously.” 

—Armando

Here are some questions to ask yourself or your 

loved one: 

■ What are the happiest and saddest times we 

have shared together?

■ What are the defining or most important 

moments of our life together?

■ What have we taught each other?

■ How has being a caregiver affected my life?

When you’re ready, you may want to step back and take a further look at life together. 

When someone you love has cancer, you may begin to rethink the things that are important 

to you. Some caregivers and their loved ones do things together that they had always 

planned to do. Others don’t make a lot of changes. Instead, they enjoy the life they have 

together much more. Life can become more about the person, not the disease.

“I have found the cancer gives us a 

lot of time to spend together. So I ask 

him questions to find things out about 

him I didn’t know. I wrote a long list 

out, and each day I ask him a few 

questions from the list. This has been 

really special for me and my father. 

And for my family, too.” —Ben
42

Exploring 

Spirituality 

Questions about the meaning 

of life and death may come up 

frequently now. On your own or 

with your loved one or a close 

friend, you might consider:

■ Why are we here?

■ What is a good life to me?

■ What is the meaning of my 

being a caregiver? 

■ What do I look back on as 

most positive and negative 

about my life? 

■ How has my faith or 

spirituality helped guide 

me as a caregiver and 

as a person? 

■ How has my faith or 

spirituality changed 

during my life?

■ Do I have anger or other 

strong emotions that are 

directed toward God? 

■ What kinds of questions 

do I have that can’t be 

answered?

■ Who or what can support me 

spiritually during 

this time?

Some things you and your loved one can do to 

celebrate your life together are:

■ Make a video of special memories.

■ Review or arrange family photo albums. 

■ Chart or write down your family’s history or 

family tree.

■ Keep a daily journal of feelings and 

experiences.

■ Make a scrapbook.

■ Help write notes or letters to other friends 

and family members.

■ Read or write poetry. 

■ Create artwork, knit, or make jewelry.

■ Choose meaningful objects or mementos 

together to give to others.

■ Write down or record funny or meaningful 

stories from the past.

You, the patient, and other family members can 

do whatever brings joy and meaning to your lives. 

Your loved one may even decide to make what is 

called an “ethical will.” It’s not a legal paper. It’s 

something a person writes to share with people he 

or she cares about. Many ethical wills contain the 

person’s thoughts on their values, memories, and 

hopes. They may also contain the lessons learned 

in life or other things that are meaningful. 

Faith and Spirituality

For some, meaning can be found in religion. 

Others look to another kind of higher power. 

Some caregivers wonder why they have to go 

through this experience. Others feel that they’ve 

been blessed by it. Some caregivers feel both 

these things.
43

Being spiritual is very personal and means something 

different for everyone. As you look at life in new ways, 

you may find a spiritual path helpful. Some ways to add 

spirituality to your daily life include: 

■ Reading religious or spiritual books, listening 

to spiritual music, or watching related videos 

or TV programs

■ Keeping uplifting quotes handy

■ Praying or meditating

■ Talking with a member of your faith community or 

someone else with a spiritual nature

■ Visiting a place of worship

■ Finding a special place where you find beauty or a 

sense of calm

■ Asking the hospital social worker or recreation therapist to suggest relaxing music

“I have the utmost 

respect for people 

who’ve been through 

this or are going 

through it. It takes a 

special person to care 

for somebody. And you 

know, it really does 

change your life for 

the better.” —Louise

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 health. But it’s very important that you take care of yourself. Taking care of yourself 

will give you strength to help others. 

Added stress and daily demands often add to any health problems caregivers already have. 

They also may have one or more of the problems below:

■ Fatigue (tiredness)

■ Sleeping problems

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

■ Slower healing of wounds

■ Higher blood pressure

■ Changes in appetite and/or weight 

■ Headaches

■ Anxiety, depression, or other mood changes
44

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’re putting your loved one’s needs first, it’s important to:

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

■ Try to remember to take your medicines as prescribed. Ask your doctor to give you extra 

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

■ 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.

■ 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. But talk with your 

doctor if lack of sleep becomes an ongoing problem.

■ 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 manage your stress.

■ 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. 

Self-Care* 

Myths Facts

“Self-care means that I have to

be away from my loved one.”

You can do things to take care of yourself 

with or without your friend or family 

member in the room with you.

“Taking care of myself takes a lot

of time away from other things.”

Some self-care only has to take a few 

minutes, such as reading an upbeat 

passage or stretching. Other self-care can 

be done between tasks in free moments.

“I’d have to learn how to do this 

‘self-care’ stuff.”

Whatever things make you feel happier, 

lighter, more relaxed, or more energized 

count as self-care. 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. 
45

Do You Need Help with Depression or Anxiety?

Remember, many of the things listed below are normal. This is especially true when you are 

dealing with a lot of stress. But talk with your doctor if you have any of these signs for more 

than 2 weeks. Your doctor may have suggestions for treatment.

Changes in Your Feelings

■ A feeling of being worried, anxious, 

“blue,” or depressed that does not 

go away

■ Feeling guilty or worthless

■ Feeling overwhelmed, out of control, 

or shaky

■ Feeling helpless or hopeless

■ Feeling grouchy or moody

■ Crying a lot

■ Focusing on worries or problems

■ Thinking about hurting or killing 

yourself

■ Not being able to get a thought out of 

your mind

■ Not being able to enjoy things (such as 

food, being with friends, sex)

■ Avoiding situations or things that you 

know are really harmless

■ Having trouble concentrating or feeling 

scatterbrained

■ Feeling that you are “losing it”

Body Changes 

■ Gaining or losing weight without 

meaning to

■ Trouble sleeping or needing 

more sleep

■ Racing heartbeat

■ Dry mouth

■ Sweating a lot

■ Upset stomach

■ Diarrhea (loose, watery stools)

■ Slowing down physically

■ Fatigue (tiredness) that won’t 

go away

■ Headache or other aches 

and pains
46

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.

Caring for someone with advanced cancer has been described by others as the toughest thing they 

have ever been through. And yet they wouldn’t have given it up for the world. 

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. 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
47

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 I would 

if he were 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 that she is doing it or not.)

I have the right to get consideration, 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 in times

when my loved one no longer needs my full-time help.

(Author Unknown)
48

Personal Affairs Worksheet

You can help your friend or family member with cancer fill out this worksheet. This information 

may help you manage your loved one’s personal affairs. Be sure to let other family members know 

about this list. It may help all of you cope with your loved one’s death and find comfort. It may 

also be a source of comfort for your loved one, to know that his needs and wishes will be met. 

Try to keep it updated and in a safe place. Make sure that only those you trust have access to it.

Banks, savings and loans

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Life insurance company

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Health insurance company

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Disability insurance company

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Homeowners’ or renters’ insurance company

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________
49

Burial insurance company

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Unions and fraternal organizations

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Attorney

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Accountant

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Executor of the estate

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Internal Revenue Service

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________
50

Social Security office

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Pension or retirement plans

________________________________________________________________________

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

Department of Veterans Affairs

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Investment companies

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Mortgage companies

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Credit card companies

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________
51

All other lenders

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Employer

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Faith or spiritual leader

Contact Information ________________________________________________________

________________________________________________________________________

What Needs to be Done _____________________________________________________

________________________________________________________________________

Safety deposit box keys and box location

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

Safe locations and lock combinations

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

Location of other important items (such as jewelry)

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________
52

Signs That Death Is Near and What You Can Do 

Certain signs and symptoms can help a caregiver know when death is near. They are described 

below, along with suggestions on how to manage them. It’s important to know that not every 

patient has all of these signs or symptoms. Also, even if any of them are present, it doesn’t 

always mean that your loved one is close to death. A member of the patient’s health care team 

can give you more guidance about what to expect. 

Drowsiness, sleeping more, or being unresponsive: Plan visits for times when your loved one 

is alert. It’s important to speak directly to the patient and talk as if he can hear, even if there is no 

response. Most patients are still able to hear after they’re no longer able to speak. Don’t try to 

arouse or shake the patient if he doesn’t respond. 

Confusion about time, place, and/or identity of friends and family members: Your loved one 

may also seem restless, or have visions of people and places that are not present. Or she may see, 

hear, and talk to loved ones who have died. She also may pull at bed linens or clothing. Gently 

remind her of the time, date, and people who are present. Try to be calm and reassuring. These 

should not be treated as hallucinations. You don’t need to convince her that her visions aren’t real.

Being more withdrawn and less social: Speak to your loved one directly. Let him know you 

are there for him. He may be aware and able to hear, but unable to respond. Some experts say 

that giving the patient permission to “let go” can be helpful. 

Less need for food and liquids, and loss of appetite: Allow your loved one to choose if and 

when to eat or drink. Ice chips, water, or juice may be refreshing if she can swallow. Lip balm 

may help to keep the mouth and lips moist.

Loss of bladder or bowel control: Keep your loved one clean, dry, and as comfortable as 

possible. Place disposable pads on the bed beneath the patient, so you can remove them when 

they become soiled. 

Dark urine or decreased amount of urine: You can ask a doctor or nurse about the need for a 

catheter. A member of the health care team can teach you how to take care of it if one is needed. 

Skin becomes cool to the touch or bluish in color: It’s okay to use blankets to warm your 

loved one. Avoid warming with electric blankets or heating pads, which can cause burns. Take 

comfort knowing that even though the skin may be cool, the patient is probably not aware of 

feeling cold.

Rattling or gurgling sounds while breathing: These may seem loud or may seem irregular and 

shallow. Your loved one may also breathe fast and then slow. Turning his body to the side and 

placing pillows under the head and behind the back may help. Although this kind of breathing 

may seem scary to you, it doesn’t cause discomfort to your loved one. An extra source of oxygen 

may help. If he can swallow, ice chips also may help. A cool mist humidifier may help as well. 

Turning the head toward a light source: Leaving soft, indirect lights on in the room may help. 

Becoming harder to control pain: It’s important to keep providing the pain medicines your 

loved one’s doctor has prescribed. You should contact the doctor if the current dose doesn’t 

seem to help. With the help of the health care team, you can also look into other methods such 

as massage and relaxation to help with pain. 
53

Resources

Cancer Information 

and Support

Federal Resources

■ National Cancer Institute 

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

trials, genetics, and supportive care. 

Visit ..................http://www.cancer.gov

Cancer Information Service 

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

users find information on the NCI website. Provides NCI printed materials.

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

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

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

■ 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 ..................http://www.aoa.gov

■ 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 ..................http://www.medicare.gov (for Medicare information) or 

http://www.cms.hhs.gov (other information)

■ 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 ..................http://www.eeoc.gov

For more resources:

See National Organizations That Offer 

Cancer-Related Services at http://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.
54

■ 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 ..................http://www.eldercare.gov

■ 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 ..................http://www.dol.gov/odep

NonProfit Organizations

■ Aging With Dignity 

Provides information and materials regarding advance directives. You can order the 

document Five Wishes, which states your end of life decisions for your health care team, and 

friends and family members.

Toll-free .........1-888-5WISHES (1-888-594-7437) 

Visit ..................http://www.agingwithdignity.org

■ 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 ..................http://www.cancer.org

■ 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 ..................http://www.painfoundation.org
55

■ 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 ..................http://www.cancercare.org

■ Cancer Support Community

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

by cancer. 

Phone: ...........1-888-793-9355

Visit: ...............http://www.cancersupportcommunity.org

■ Center to Advance Palliative Care

Goal is to increase the availability of quality palliative care services for people facing serious 

illness. Offers training and assistance to health care professionals.

Phone ..............1-212-201-2670

Visit ..................www.capc.org

For patients and 

families ..........http://www.getpalliativecare.org

■ Family Caregiver Alliance

Family Caregiver Alliance addresses the needs of families and friends who provide long-term 

care at home. 

Toll-free .........1-800-445-8106

Visit ..................http://www.caregiver.org

■ Livestrong Foundation

The Livestrong 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 ..................http://www.livestrong.org

■ National Hospice and Palliative Care Organization (NHPCO)

Has information on hospice care, local hospice programs, advance directives in different 

states, and finding a local health care provider. It offers education and materials on palliative 

and end-of-life issues through its Caring Connections program, as well as links to other 

organizations and resources. 

Toll-free .........1-800-658-8898

Visit ..................http://www.nhpco.org

 Caring Connections

Toll-free .........1-800-658-8898

Visit ..................http://www.caringinfo.org
56

■ 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 ..................http://www.needymeds.com

■ 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 ..................http://www.canceradvocacy.org

■ National Family Caregivers Association (NFCA)

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

for caregivers.

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

Visit ..................http://www.nfcacares.org

■ 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 ..................http://www.patientadvocate.org

NIH Publication No. 14-5727

Printed September 2014