When Someone 

You Love Is 

Being Treated 

for Cancer 

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A Guide for Family & Friends

U.S. DEPARTMENT

OF HEALTH AND

HUMAN SERVICES

National Institutes

of Health

When Someone 

You Love Has

Advanced Cancer

Support for Caregivers
%

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 from the National Cancer Institute

(NCI). To learn more about specific types of cancer or to request

any of these booklets, visit NCI's Web site (www.cancer.gov). 

You can also call NCI’s Cancer Information Service toll-free 

at 1-800-4-CANCER (1-800-422-6237) to speak with an 

information specialist.

We would like to offer our sincerest gratitude to the

extraordinary caregivers, health professionals, and

scientists who contributed to the development and 

review of this publication.
When Someone You Love 

Has Advanced Cancer

“If there's one thing that has 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 some sections that 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 NCI booklets for caregivers that can be ordered or printed

from the Web are: 

• Facing Forward: When Someone You Love Has Completed 

Cancer Treatment 

• When Someone You Love Is Being Treated for Cancer 

• Young People With Cancer: A Handbook for Parents 

• When Your Parent Has Cancer: A Guide For Teens 

• When Your Brother or Sister Has Cancer: A Guide for Teens 
Table of Contents

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..................................................................................52

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

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. This booklet

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, there may be new choices to make about care

and future steps. 

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

can control and the things 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. 

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.

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 response of most caregivers is to put their own feelings and needs

aside. They try to focus on the person with cancer and the many tasks of caregiving. This may be

fine for a 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.

1

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.
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 is not responding to treatment.

You may have been told that long-term remission is 

not 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 helping make these

decisions 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 he or

she will live. 

Thinking or talking about these issues may feel like

you are 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 friend or family member still deserves good medical care and support from the health care

team even if the treatment changes. 

Making Decisions Together

You may have been caring for the cancer patient for

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

involved in helping make choices about next steps

for care. Some of these choices may include: 

n Treatment goals

n When to use hospice care

n Financial decisions

n How to get support from family members

“My husband has been

coping with cancer for a long

time. Now that the cancer 

is progressing, I’m learning

that his needs are changing,

and so are mine. We’re

facing new issues, and it’s

hard.” —Vera

“I guess some people don’t

want a lot of information

because they feel they can’t

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
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. 

Questions to ask: 

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

another treatment? 

n Is this treatment meant to ease side effects or

slow the spread of cancer?

n Is there a chance that a new treatment will 

be found while we try the old one?

n What are the possible side effects and 

other downsides of the treatment? How 

likely are they? 

n 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 is 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. 

3

“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 only got 

6 months to live?” —Dan
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: 

n Your own stress may make it hard to decide.

n Your ideas about how to move forward may differ from the ideas of others.

n The patient may be less able to take in new facts.

n Other family members’ beliefs may differ from the patient’s.

n 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.

4

“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

this issue.” —Shirelle
Palliative Care

All patients have a right to comfort and quality of life

throughout their care. This kind of care 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 help. 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. 

Choices for Care

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

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

n Clinical trials (research studies)

n Palliative radiation, chemotherapy, or surgery 

n Hospice care 

n 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. It also does not mean she will stop receiving

palliative care. The health care team can offer information

and advice on treatment options. 

5

“We have got 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

Sometimes patients only want 

to focus on the cancer itself. 

Yet they can improve their quality

of life with palliative care.
Clinical Trials 

Clinical trials are research studies that try to find better ways to treat cancer. Every day, cancer

researchers learn more about treatment options from clinical trials. 

The trial your loved one may choose will depend on the type of cancer he has. It will also depend

on what treatments he has already had. Each study has rules about who can take part. These rules

may include the patient’s age, health, and type of cancer. 

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

these before any decisions are made.

Taking part in a clinical trial could help your loved one, and also help others who get cancer in

the future. But insurance and managed care plans do not always cover costs. What they cover

varies by plan and by study. Talk with the health care team to learn more about coverage for

clinical trials. 

For more information about clinical trials, see NCI’s booklet, Taking Part in Cancer Treatment

Research Studies (see inside cover to order).

Palliative Radiation, Chemotherapy, or Surgery

Some palliative radiation and palliative chemotherapy may help relieve pain and other symptoms.

In this way, they may improve a person’s quality of life even if they don’t slow the cancer. These

treatments may be given to remove or shrink

a tumor. Or they may be given to slow down a

tumor’s spread. Palliative surgery is

sometimes used to relieve pain and other

symptoms. For more information, see the

NCI booklets, Chemotherapy and You and

Radiation Therapy and You (see inside cover).

6
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 comfortable and as symptomfree as possible. Hospice doctors, nurses, chaplains,

social workers, and volunteers are specially trained. They

are dedicated to supporting their patients’ and families’

emotional, social, and spiritual needs, as well as dealing

with patients’ medical symptoms. 

Many people don’t realize that hospice can provide

support for more than a few weeks. As a result, many

caregivers have said that they didn’t look into hospice as

early as they could have. Later, 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 to see whether hospice care is still right for them. Services

may include: 

n Doctor services 

n Nursing care

n Medical supplies and equipment

n Drugs for managing cancer-related symptoms and pain

n Short-term inpatient care

n Homemaker and home health aide services

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

n Counseling

n Social work services

n Spiritual care

n Bereavement (grief) counseling and support

n Volunteer services

7

“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.” 

—Gayle
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, where there

are specialists to help guide care. They also have 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 hospices 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. An example

might be pneumonia or a

bladder infection.

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 Web site at www.nhpco.org 

to find a hospice in your community. 

Home Care

Home care services may treat the cancer itself, not just

the symptoms. This is for people who get treated at

home rather than in a hospital. If the patient qualifies

for home care services, they may include: 

n Managing symptoms 

n Monitoring care 

n Physical and other therapies

n 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.

8

“I wish I’d found

out sooner about

hospice care. But

you don’t know

what you need at

the beginning.”

—Bruce
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 treatment. 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 are 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. 

9

“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. Blackwell
Your Loved One's Eating 

It's okay to offer your loved one

food, but try not to pressure them

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 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 is not eating enough or

eating properly, ask the doctor or

nurse for an opinion.

This is when it is 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 is 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 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 to order).

10
Asking About Other Changes

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

Changes may occur in: 

n Looks

n Personality or mood

n Memory 

n Sleep

n 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. This way you will know that these changes

are normal, and you can 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.

11

“I remember in the early

days my mom had a lot of

depression, and I thought it

was her illness. 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.” —Tia

“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 this was

common when taking these

drugs, but how was I

supposed to know that?” 

—Pat
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 are

clear to you and to 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:

n Make a list of questions before each appointment.

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

tape recorder.

n Get a phone number of someone to call with 

follow-up questions.

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

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

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

drugs and tests your loved one has taken.

n Keep a record of any upsetting symptoms or side

effects. Note when and where they occur. 

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

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

12
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 or 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.

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:

n People who have helped before may not help now.

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

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

n 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.

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 other people 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. 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.

13

“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

“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
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 leave 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. 

14

Remember that getting help for yourself can also help

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

n You may stay healthier.

n Your loved one may feel less guilty about all the

things that you’re doing.

n Some of your helpers may offer time and skills

that you don’t have.

n 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
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 those things that would

help you most. For instance, you may want someone to:

n Help with household chores, including cooking,

cleaning, shopping, yard work, and childcare 

or eldercare. 

n Talk and share your feelings. 

n Drive your loved one to appointments.

n Pick up a child from school or activities.

n Pick up a prescription.

n Look up information you need.

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

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 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”

Some people may choose not to help. This may hurt your feelings or make you angry. It’s

especially hard coming from those you expected to help you. You might wonder why someone

wouldn’t help you. There are a lot of reasons. Some common ones are: 

n Some may be coping with their own problems. Or they may not have enough time.

n Some 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.

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

n Some people may not realize how hard things are for you. Or they may not understand

that you need help unless you ask for it directly.

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

If people choose not to help, you may want to explain your needs to them and be direct about

what you are asking. 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.

15

“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. 

What can I do?’” 

—Antoine
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 e-mail 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 for the patient. Try to

create a support network of people who live nearby.

These should be people who 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. Having 

a copy of the local phone book for your loved one’s area can give you quick access to

resources. Checking the white and yellow pages online is useful, too. Give your phone

numbers to your loved one’s health care team and others for emergencies.

Other Tips

n Ask a local family member or friend to update you daily by e-mail. Or, consider

creating a Web site to share news about your loved one’s condition and needs.

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

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

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

hospital social worker may also know of other resources, such as private pilots or

companies that help people with cancer and their families.

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

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

allow themselves enough time to rest after their visits.

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

bills. Or, review your long-distance and cell phone plans. See if you can make any

changes that would reduce your bills.

16

“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
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.

Handling Money Worries

The financial challenges that people with cancer and

their families face are very real. During an illness, you

may find it hard to find the 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 may also want to

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, “Financial Assistance for Cancer Care,” 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 affect your work life in many ways, such as:

n Having mood swings that leave coworkers

confused or reluctant to work with you

n Being distracted or less productive

n Being late or calling in sick because of stress

n Feeling pressure from being the sole provider

for your family if your spouse or partner is

unable to work

n Feeling pressure to keep working, even though

retirement may have been approaching

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. 

17

“A lot of times I come

home from eight days at

the hospital with no sleep

and have to go to work the

next day. It’s very tiring.” 

—Betsy

“I’m not working for the

money. I’m working for the

benefits. If we don’t have

benefits, we’d lose

everything.” —Philip
18

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.

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

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

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

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

n What kind of help does your loved one need? 

n Is it risky for her to live alone? 

n How often will she need help? 

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

n Losing her independence

n Being seen as weak or a burden to others

n 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, including visiting nurses, those who work with older adults,

and others may be able to help.
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. 

n 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.

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

speak for themselves. 

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

patient 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 you both

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 Web site. 

You and your loved one may have different opinions. You should share your opinions, but in the end,

it’s his or her choice. If you both can’t agree, you may want to ask someone else to help. You might

talk to a member of your faith community, 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:

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

n A trust appoints a person the patient chooses to manage his money for him.

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

he or she can’t make them.

19
A Checklist for Organizing 

Your Loved One’s Affairs

n If your loved one can’t physically

gather important papers, have her

make a list of where you can 

find them.

n Keep papers in a fireproof box or

with a lawyer.

n 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.

n Although original documents are

needed for legal purposes, she

should give family members

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.

n Clearing up insurance issues. Contact the health

insurance company if the patient decides to try a

new treatment or go into hospice. 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.

n Putting affairs in order. You can help your

friend or family member 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. 

n 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. 

20
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. 

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 is not 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 are 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.

21

“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. We just sit down

with the doctor and go over

all the options and try to do

the best we can.” —Helen
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. 

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:

n Practice what you’ll say in advance.

n Find a quiet time. Ask if it’s an okay time to talk.

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

want as the result?

n Speak from your heart. 

n Allow time for your loved one to talk. Listen and

try not to interrupt.

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

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

22

“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

“There was so much we

wanted to say to John, but we

didn’t know how to find the

words. So our friend 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 all.” —Susie
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.

If you continue to have trouble talking about painful issues, ask for help from a mental health

professional. One may be able to explore issues that you didn’t feel you could yourself. But if your

loved one doesn’t want to go, you can always make an appointment to go by yourself. You may pick

up 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. 

23

Words to Try*

When You Think You Want to Say:

Dad, you are going to be just fine.

Don’t talk like that! You can beat this!

I can’t see how anyone can help.

I just can’t talk about this.

What do the doctors know? You might live

forever.

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

There has to be something more to do.

Don’t be glum. You’ll get well.

Try This Instead:

Dad, are there some things that worry you?

It must be hard to come to terms with all this.

We will be there for you always.

I am feeling a little overwhelmed right now.

Can we take this up later tonight?

Do you think the doctors are right? How does

it seem to you?

I need you here. I will miss you terribly. 

But we will get through somehow.

Let’s be sure to get the best of medical

treatments, but let’s be together when we 

have done all we can.

It must be hard. Can I just sit with you for 

a while?

* From Lynn, J. and J. Harrold. 1999. Handbook for Mortals: Guidance for People Facing Serious Illness. Oxford University

Press: New York, NY. Reprinted with permission.
24

Talking with Children and Teens

Children as young as 18 months begin to think about

and understand the world around them. And 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 are feeling, as well as to

find out how they are feeling. And never assume you

know what your children are thinking. You don’t

know how they will react to information, either.

Experts say that telling children the truth about the

cancer is better than letting them imagine 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 to learn for everyone. 

“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. 1997. When a Parent Has Cancer: A Guide to Caring for Your Children. New York, NY; HarperCollins

Publishers Inc., pp. 3,8. Used with permission.
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:

n Be confused, scared, angry, lonely, 

or overwhelmed

n Be scared or unsure how to act when they

see the treatment’s effects on the patient

n Act clingy or miss all the attention they

used to get

n Feel responsible or guilty

n Get angry if they’re asked to do more

chores around the house

n Get into trouble at school and neglect 

their homework

n Have trouble eating, sleeping, keeping up

with schoolwork, or relating to friends

n Be angry that someone else is taking care

of them now

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

other problems appear. If you notice changes, you may want to ask for help from your pediatrician

who knows your family already. You could also seek advice from a school counselor or social

worker. Or, your child may prefer to talk to someone outside the family, such as a trusted teacher

or coach. A pediatrician or social worker may also be able to suggest a mental health professional

for your children to talk to. 

Other Behaviors

It is very normal for some children to show signs of regression. They may begin acting younger

than their years, resuming behaviors that they had stopped. Or they may lose skills they had

mastered recently. This is usually a sign of stress. It’s telling you 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 feel you need more advice. 

25
Try to Ask Open-Ended Questions 

For some families, talking about serious issues is very hard. As hard 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

kinds of things you might want to say. They are fine for children of any age.

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

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

away either.” 

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

about all of us.”

n “You can ask me anything anytime.”

n “Are you okay talking with me about this? Or would you rather talk to Mrs. Jones at school?”

n “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 Them to Share Their Feelings and Questions 

Let children know that 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 Bits of Time 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 e-mail. 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 five

minutes alone with each child

without interruptions can

make a world of difference.

26
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:

n 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. 

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

attention and support.

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

nothing to do with the family illness.

n Teens want to feel normal. Make sure they have time for regular activities.

n Keep the communication lines open and involve them 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 your teen’s activities and feelings right now, involve another

responsible adult to be closely connected with your teen.

27
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:

n “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.”

n “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!”

n “Don’t worry if you are 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 only

prolongs the grief they will feel. And if you don’t talk about it or don’t tell the truth about it, you

risk your children having difficulty trusting others when they grow up. Also, if you don’t talk about

it, you can’t help your children prepare, nor can you help them cope with what is happening.

They will need the time to accept the eventual loss of their loved one. 

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 the worst. Let them know that

everything is being done to keep their loved one comfortable. Tell them that you will keep them

updated. And let them say goodbye.

In order to answer these 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 while accepting the probable

outcome. If you are 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 suggest

ways of handling these questions, too. They may know

of programs offered for children. Or they may suggest

books, videos, and Web sites that explore these topics. 

28

“Even though I was only 5,

my mom explained what

was going on when my dad

was dying. Now, ten years

later, I realize how much 

it helped that she told me

the truth.” —Kevin
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. Sometimes talking

about these things 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: 

n Copes with change and the unknown

n Feels about being a caregiver or being cared for

n Handles changing roles in the relationship 

or home

n Would like to be connected to one another

n Sees what issues may be straining the

relationship

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

appreciated

n Feels thankful for the other person

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 you’re trying to get used

to less help. It also may be hard to notice the small things your partner is doing to get through this

hard time. There’s just 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 someone’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.

29

“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

doing great.” —Ashley
Communication Troubles

Studies show that open and

caring comunication 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:

n Your partner is tired, in pain, or uncomfortable

because of the treatment.

n You’re tired. 

n Your relationship feels distant or strained. 

n You or your partner may not be comfortable with

the way he or she looks.

n You may be afraid of hurting your partner.

n Your partner’s treatment might be affecting his or

her interest in sex or ability to perform. 

You can still have an intimate relationship in spite of these

issues. Intimacy isn’t just physical. It also involves feelings.

Here are some ways to keep your intimate relationship:

n Talk about it. Choose a time when you both 

can talk. Focus on how you can renew your

connection.

n 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.

n Make space. Protect your time together. Turn off

the phone and TV. If needed, find someone to

take care of the kids for a few hours.

n 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. 

n Try new touch. Cancer treatment or surgery can

change your partner’s body. Areas where touch

used to feel good may now be numb or painful.

For now, you can figure out together what kind 

of touch feels good, such as holding, hugging, 

and cuddling.

30
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: 

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

n When to use hospice care 

n What treatment the patient desires

n 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 

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: 

n Have the health care team explain the overall goals for care. 

n Let the family state their wishes for care.

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

n Clarify caregiving tasks.

Sometimes other close family and friends may not agree on what should be done. It’s very

common for families to argue over treatment options. Or they argue that some caregivers help

more than others. While everyone may be trying to do

what they think is best for your loved one, family

members may disagree about what this means. 

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. 

31

“My sisters keep hoping for

the magic bullet. I don’t

know how to get them to

understand how serious

things are.” —Verdell
How to Communicate when Support Is Not Helpful

Sometimes, people may be eager to help you because they want to feel useful. At times, this

assistance is not helpful. You may not need it yet, or you may simply want to spend time alone with

your sick loved one. Other people may offer unwanted advice on parenting, medical care, or any

number of other things. Common examples of things people have said:

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

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

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

been a real pain.” 

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

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

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

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

letters. Or they can pray or send good thoughts. 

Some people may offer unwanted parenting advice. This may come from feeling helpless to do

anything, yet wanting to show their concern. Since they can’t offer advice on medical care, it helps

them to express their opinion on child care. While it may come from a good place, it may still

seem judgmental to you. 

It’s your decision on how to deal with unwanted

advice about your kids. You don’t have to respond at

all if you don’t want to. If you think their concerns

are valid, then talk to a counselor or teacher about

what steps to take. Otherwise, thank them. And

reassure them that you are taking the necessary steps

to get your children through this tough time. 

32

“Our neighbor said she saw

our babysitter with our kids

at the mall. She made some

remark about how shouldn’t

they be spending their free

time with their sick father?

It’s like she was trying to

make me feel like a bad

mother or something.” 

—Lori
Caring for Yourself

Coping with Your Feelings

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

your loved one. They 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 common feelings caregivers have

may include: 

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 may

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. 

33

“Some days I am 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

“There is helplessness that

you feel. 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
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

and the life you used to have.

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.

34

“I think there’s a great

deal of preparation being

done now, almost

advanced bereavement.

Sometimes I feel myself

grieving him and he’s not

even gone yet.” —Ann
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 are caring for directs anger at you. She may take her stress out on you. And sometimes

medicine causes people to have more anger than they normally would. Because of these reasons,

try not to take it 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.

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. If these feelings remain, talk with 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. You may feel

that 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.

35

“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.” —David
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. 

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.

“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
Connect with Other People

Studies show that connecting with 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. 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 

It can be a tricky balance between thinking too much about the cancer and not thinking enough

about it. 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.

Confront Your Anger or Frustration

You may find that you are getting more and more

angry and frustrated as the person you are caring

for gets sicker. It may help to try to diffuse 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. 

37

“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
Let Go of Your Guilt 

If you are feeling guilty, here are some things you 

can do:

n 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. 

n 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.

n 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. 

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 Web sites with

support groups have helped them a lot. 

38

“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

“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
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 e-mail.

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:

n 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 help both of you.

n Get referrals from friends or health care

professionals. Your local agency on aging should also

have suggestions.

n 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. 

39

“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
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, there’s no time left for yourself. Or you may feel guilty that you can enjoy things

that your loved one can’t right now. 

Most caregivers say they have those same feelings. But

caring for your own needs, hopes, and desires is

important to give you the strength to carry on. (See the

“Caregiver’s Bill of Rights” on page 47.)

Taking time to recharge your own body, mind, and spirit

can help you be a better caregiver. And if you are sick or

injured, it’s even more important that you take care of

yourself, too. You may want to think about: 

n Finding nice things you can do for yourself—

even for a few minutes

n Finding nice things others can do or set up 

for you 

n Finding new ways to connect with friends

n Taking larger chunks of time that’s “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. 

40

“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 from chemo

to radiation. It’s very

tiring.” —Adele
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. 

Here are some questions to ask yourself or your

loved one: 

n What are the happiest and saddest times we

have shared together?

n What are the defining or most important

moments of our life together?

n What have we taught each other?

n 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 may do things together that they had always planned to do.

Others may not 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.

41

“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.” —Don

“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 have learned

things about her I never

knew. And we have become

really close. I think about life

differently, you know. I take

it more seriously.” —Ben
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?

• 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:

n Make a video of special memories.

n Review or arrange family photo albums. 

n Chart or write down your family’s history or

family tree.

n Keep a daily journal of feelings and

experiences.

n Make a scrapbook.

n Help write notes or letters to other friends

and family members.

n Read or write poetry. 

n Create artwork, do knitting, or make jewelry.

n Choose meaningful objects or mementos

together to give to others.

n 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.

42
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: 

n Reading religious or spiritual books,

listening to spiritual music, or watching

related videos or TV programs

n Keeping an uplifting quote handy

n Praying or meditating

n Talking with a member of your faith

community or someone else with a

spiritual nature

n Visiting a place of worship

n Finding a special place where you find

beauty or a sense of calm

n Asking the hospital social worker 

or recreation therapist to suggest 

relaxing music

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:

n Fatigue (tiredness)

n Sleeping problems

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

n Slower healing of wounds

n Higher blood pressure

n Changes in appetite and/or weight changes

n Headaches

n Anxiety, depression, or other mood changes

43

“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.” —Steve
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:

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

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

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

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

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

home. For example, sandwiches, salads, or packaged foods and canned meats fit easily into

a lunch container.

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

asleep. Short naps can energize you if you aren’t getting enough sleep. But talk with your

doctor if lack of sleep becomes an ongoing problem.

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

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

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

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

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

on the phone. Whatever helps you unwind, you should take the time to do it. 

Self-Care*

Myth: “Self-care means that I have to be away from my loved one.”

Fact: You can do things to take care of yourself with or without your friend or family member in

the room with you.

Myth: “Taking care of myself takes a lot of time away from other things.”

Fact: Some self-care only takes a few minutes, such as reading an upbeat passage from a book. 

Other self-care can be done in bits and pieces between tasks.

Myth: “I’d have to learn how to do this ‘self-care’ stuff.”

Fact: 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.

44

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

n A feeling of being worried, anxious,

“blue,” or depressed that does not 

go away

n Feeling guilty or worthless

n Feeling overwhelmed, out of control,

or shaky

n Feeling helpless or hopeless

n Feeling grouchy or moody

n Crying a lot

n Focusing on worries or problems

n Thinking about hurting or killing

yourself.

n Not being able to get a thought out 

of your mind

n Not being able to enjoy things (such

as food, being with friends, sex)

n Avoiding situations or things that you

know are really harmless

n Having trouble concentrating or

feeling scatterbrained

n Feeling that you are “losing it”

45

Body Changes 

n Gaining or losing weight without

meaning to

n Trouble sleeping or needing more sleep

n Racing heartbeat

n Dry mouth

n Sweating a lot

n Upset stomach

n Diarrhea (loose, watery stools)

n Slowing down physically

n Fatigue (tiredness) that won’t go away

n Headache or other aches and pains
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 being 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. This is much like the way

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

46

“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, knowing 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 _________________________________________________________________

_____________________________________________________________________________________
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 _________________________________________________________________

_____________________________________________________________________________________

49
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)

_____________________________________________________________________________________

_____________________________________________________________________________________

_____________________________________________________________________________________

_____________________________________________________________________________________
Signs That Death Is Near 

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 is important to know that not every

patient has all of them. Also, even if any of the symptoms are present, it does not always mean that

your loved one is close to death. A member of the patient’s health care team can give you more

information about what to expect. 

Drowsiness, sleeping more, or being unresponsive: You and your family can plan visits and

activities for times when your loved one is alert. It is 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 are

no longer able to speak. Patients should not be shaken if they do not 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 may pull at bed linens or clothing. Gently remind them

of the time, date, and people who are with them. 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 and remove them when they become soiled. 

Dark urine or decreased amount of urine: You can ask a member of the health care team 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 the patient 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 does not 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 is important to provide pain medicines as your loved one’s

doctor has prescribed. You should contact the doctor if the current dose does not seem to help.

With the help of the health care team, you can also look into methods such as massage and

relaxation to help with pain. 

52
Resources*

Cancer Information and Support

Federal Agencies

National Cancer Institute 

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

supportive care. Lists clinical trials and specific cancer topics in NCI’s Physician Data Query

(PDQ®) database.

Web site: www.cancer.gov 

Cancer Information Service 

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

information on the NCI Web site. Provides NCI-printed materials.

Phone: 1-800-4-CANCER (1-800-422-6237)

TTY: 1-800-332-8615

Web site: www.cancer.gov/cis

Chat online: Click on “LiveHelp.”

Administration on Aging 

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

training, respite care, and supplemental services.

Phone: 1-202-619-0724

TTY: 1-800-877-8339 (Federal Relay Service) or 1-202-585-1840

Web site: 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.

Phone: 1-800-MEDICARE (1-800-633-4227)

Web sites: www.medicare.gov

www.medicare.gov/publications 

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.

Phone: 1-800-669-4000

TTY: 1-800-669-6820

Web site: www.eeoc.gov

53
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.

Phone: 1-800-677-1116

Web site: 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.

Phone: 1-866-ODEP-DOL (1-866-633-7365)

TTY: 1-877-889-5627

Web site: www.dol.gov/odep 

Private 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: www.agingwithdignity.org 

American Cancer Society

National Cancer Information Center

Provides a variety of cancer information and support to patients, families and caregivers. Also

supports research, community education, and advocacy and public policy issues.

Phone: 1-800-ACS-2345 (1-800-227-2345)

Web site: www.cancer.org

CancerCare

CancerCare provides support, information, and financial and practical help to people with cancer

and their loved ones free of charge. 

Phone: 1-800-813-HOPE (1-800-813-4673)

Web site: www.cancercare.org

Family Caregiver Alliance

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

at home. 

Phone: 1-800-445-8106

Web site: www.caregiver.org

54
Gilda’s Club, Inc.

Gilda’s Club provides social and emotional support for cancer patients and their families and friends. 

Phone: 1-888-GILDA-4-U (1-888-445-3248) 

Web site: www.gildasclub.org

Hospice Foundation of America 

Provides programs and materials on hospice care, caregiving, grief, and end of life. They also

provide a hospice locator service, and links to other organizations and resources.

Toll-free: 1-800-854-3402 

Visit: www.hospicefoundation.org 

Lance Armstrong Foundation 

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

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

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

1-866-235-7205 (LIVESTRONG SurvivorCare Program)

Web site: www.livestrong.org 

NeedyMeds

The NeedyMeds Web site lists medicine assistance programs available from drug companies. 

Web site: www.needymeds.com

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

worker to contact them on behalf of your loved one.

National Coalition for Cancer Survivorship (NCCS)

NCCS provides information and resources on cancer support, advocacy, and quality-of-life issues to

cancer survivors and their loved ones. 

Phone: 1-877-NCCSYES (1-877-622-7937)

Web site: www.canceradvocacy.org

National Family Caregivers Association (NFCA)

NFCA provides information, education, support, public awareness, and advocacy for caregivers.

Phone: 1-800-896-3650

Web site: www.nfcacares.org

National Hospice and Palliative Care Organizations (NHPCO) 

NHPCO offers information on hospice services and issues for terminally ill patients and their

family members. NHPCO provides discussion groups, publications, information about how to find

a hospice, and information about the financial aspects of hospice. 

Phone: 1-703-837-1500 or 1-800-658-8898 (helpline)

Web site: www.nhpco.org 

55
Patient Advocate Foundation (PAF) 

PAF provides education, legal counseling, and referrals to cancer patients and survivors. It

specializes in matters related to managed care, insurance, financial issues, job discrimination, and

debt crisis.

Phone: 1-800-532-5274 

Web site: www.patientadvocate.org

The Well Spouse Foundation 

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

disabled persons.

Phone: 1-800-838-0879

Web site: www.wellspouse.org

The Wellness Community 

The Wellness Community is a national organization that provides support groups, stress reduction

and cancer education workshops, nutrition guidance, exercise sessions, and social events.

Phone: 1-888-793-WELL (1-888-793-9355) 

Web site: www.thewellnesscommunity.org

* For a complete list of resources, see the fact sheet, “National Organizations That Offer 

Services to People With Cancer and Their Families” at www.cancer.gov, search terms 

“national organizations.” Or call 1-800-4-CANCER (1-800-422-6237) to ask for it.

56

NIH Publication No. 09-5727

Revised July 2009

Printed September 2009