The purpose of this book is to focus on you and your needs.
Overview
Helping Your Loved One During Advanced Cancer
Working with the Health Care Team
Getting Support
Life Planning
Talking with Family and Friends
Caring for Yourself
Reflection
Caregiver's Bill of Rights
Personal Affairs Worksheet
Signs That Death Is Near
Resources
For More Information
The purpose of this book is to focus on you and your needs.
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"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
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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:
Overview
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.
There are other booklets available that talk about how to be a better caregiver. But the purpose of
this booklet is to focus on you and your needs.
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.
Helping Your Loved One During Advanced Cancer
"My husband has been
fighting 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
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.
"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
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:
- Treatment goals
- When to use hospice care
- Financial decisions
- How to get support from family members
When dealing with advanced cancer, people have different goals for their care. Some want to keep
following more aggressive treatments. Others decide to choose alternative paths for care or let
nature take its course. You may wonder: "Have we done everything possible to treat the cancer, or
should we try another treatment?" It's natural to want to do all you can, but you should weigh
these feelings against the positives and negatives for your loved one.
"You really want to know if
the cure 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
Questions to ask:
- What's the best we can hope for by trying
another treatment?
- Is this treatment meant to ease side effects,
slow the spread of cancer, or both?
- Is there a chance that a new treatment will
be found while we try the old one?
- What are the possible side effects and
other downsides of the treatment? How
likely are they?
- Are the possible rewards bigger than the
possible drawbacks?
Asking these questions may help the patient decide
whether to continue or begin more treatment. It's best to work together on this process. It will
help you figure out both of your needs and the needs of others close to you.
It is important to ask your health care team what to expect in the future. And it's important to be
clear with them about how much information you and the patient want from them.
"I think some people,
like me, want to know
everything. I want no
surprises. My husband
doesn't want to know
anything. We struggle with
this issue."
- Shirelle
For many families, it is important that your loved one be in charge of making decisions. But in
some families and cultures, it's common for the caregiver to make many of the decisions. And they
may make them with or without the patient knowing. Or sometimes the patient wants the caregiver
to make all the decisions. This may be hard for many reasons:
- Your own stress may make it hard to decide.
- Your ideas about how to move forward may differ from the ideas of others.
- The patient may be less able to take in new facts.
- Other family members' beliefs may differ from the patient's.
- 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.
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. Sometimes patients don't want to tell the doctor
about their symptoms. They only want to focus on the cancer. Yet they can improve their quality of
life with palliative care.
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.
"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."
- Joshua, oncologist
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:
- Clinical trials (research studies)
- Palliative radiation, chemotherapy, or surgery
- Hospice care
- Home care
Many patients choose more than one option. Your loved one should base her decision on the risks
and benefits of available treatments as well as her own feelings about life and death. You should
both ask all the questions you need to. If she chooses not to get any more active cancer treatment, it
does not necessarily mean a quick decline and death. It also does not mean she will stop receiving
palliative care. The health care team can offer information and advice on treatment options.
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, If You Have Cancer: What You Should
Know About Clinical Trials. 4
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).
"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
Hospice care is an option if you and your loved one feel
there is no longer a benefit from cancer treatments.
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 symptom free
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:
- Doctor services (The patient may still keep his own doctors, too.)
- Nursing care
- Medical supplies and equipment
- Drugs for managing cancer-related symptoms and pain
- Short-term inpatient care
- Homemaker and home health aide services
- Respite (RES-pit) services to give you a break from caring for your loved one
- Counseling
- Social work services
- Spiritual care
- Bereavement (grief) counseling and support
- Volunteer services
"I wish I'd found
out more about
hospice care. But
you don't know
what you need at
the beginning."
- Bruce
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 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:
- Managing symptoms
- Monitoring care
- Physical and other therapies
- Providing medical equipment
Your loved one may have to pay for home care services.
Check with your insurance company. Medicare,
Medicaid, and private insurance companies will
sometimes cover home care services when ordered by
the doctor. But some rules apply. So talk to a social
worker and other members of the health care team to
find out more about home care.
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 not exact. 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.
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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 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.
"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."
- Nicole, oncologist
Caregivers often worry about their loved one being
in pain. People who have their pain managed are
able to focus on enjoying life. 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.
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. 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.
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.
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.
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"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
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:
- Looks
- Personality or mood
- Memory
- Sleep
- Appetite or nutrition needs
The person you are caring for may or may not go
through any of these changes. But you should ask the
doctor whether you need to be aware of them. At the
same time, ask what you can do about them if they
happen. 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 in "Signs That Death Is Near 5".
"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.
If I had known about that
earlier, I could have dealt
with it a lot better."
- Tia
If you are going with the patient to medical visits, here are
some general tips for meeting with the health care team:
- Make a list of questions before each appointment.
- Take notes. Or ask the doctor if it's okay to use a
tape recorder.
- Get a phone number of someone to call with
follow-up questions.
- Keep a file or notebook of all the papers and test
results. Make sure it's taken to medical visits.
- Keep records or a diary of all the visits. List the
drugs and tests your loved one has taken.
- Keep a record of any upsetting symptoms or side
effects. Note when and where they occur.
- Find out what to do in an emergency. This includes
who to call, how to reach them, and where to go.
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.
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Getting Support
"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
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:
- People who have helped before may not help now.
- Others who have helped before may want to help in new ways now.
- People who haven't helped before may start helping now.
- Agencies that couldn't help before may offer services now.
"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
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.
Remember that getting help for yourself can also help
your loved one, as well as other friends and family.
- You may stay healthier.
- Your loved one may feel less guilty about all the
things that you're doing.
- Some of your helpers may offer time and skills
that you don't have.
- Having a support system is a way of taking care of
your family. The idea is to remove some tasks so
that you can focus on those that you can do.
Talk with someone you trust, such as a friend, member of
your faith community, or counselor. Other people may be
able to help you sort out your thoughts and feelings.
They may also be able to help you find other ways to
get support.
"I was taking on way too
much. When I finally
asked, more people than
I expected were more
than willing to help."
- Laney
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.
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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:
- Help with household chores, including cooking,
cleaning, shopping, yard work, and childcare
or eldercare.
- Talk and share your feelings.
- Drive your loved one to appointments.
- Pick up a child from school or activities.
- Pick up a prescription.
- Look up information you need.
- Be the contact person and help keep others updated on your loved one.
"The people that I had
thought would help me
weren't there. It was
the ones that I really
didn't expect to help
that were right there
saying, 'I'm here.
What can I do?'"
- Antoine
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.
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:
- Some may be coping with their own problems. Or they may not have enough time.
- 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.
- Some believe it's best to keep a distance when people are struggling.
- 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.
- 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.
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"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
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?
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.
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.
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.
Call a travel agent to find out if airlines or bus lines have special deals for patients
or family members. The hospital social worker may also know of other resources,
such as private pilots or companies that help people with cancer and their families.
If you are traveling to see your loved one, time your flights or drives so that you
have time to rest when you return. Many long-distance caregivers say that they don't
allow themselves enough time to rest after their visits.
Consider getting a phone card from a discount store to cut down on long-distance
bills. Or, review your long-distance and cell phone plans. See if you can make any
changes that would reduce your bills.
|
|
Life Planning
It's common to feel sad, angry, or worried about lifestyle
changes that happen because of your loved one's
cancer. You may also be making major decisions that
will affect your job or your finances. Finding ways to
cope with these issues can bring some peace of mind.
"I'm not working for the
money. I'm working for the
benefits. If we don't have
benefits, we'd lose
everything."
- Philip
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 6. You
can also get the NCI fact sheet, "Financial Assistance for Cancer Care 7," 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.
"A lot of times I come home
from 8 days at the hospital
with no sleep and have to
go to work the next day.
It's very tiring."
- Betsy
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:
- Having mood swings that leave coworkers
confused or reluctant to work with you
- Being distracted or less productive
- Being late or calling in sick because of stress
- Feeling pressure from being the sole provider
for your family if your spouse or partner is
unable to work
- 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.
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 6.
Sometimes questions are raised about whether a loved one should live alone or with someone else.
When making these decisions, here are a few good questions to ask:
- What kind of help does your loved one need?
- Is it risky for her to live alone?
- How often will she need help?
You'll also need to consider how your loved one feels. She may fear:
- Losing her independence
- Being seen as weak or a burden to others
- Moving to a health care or other type of assisted living facility
Sometimes it's easier to consider a change in living arrangements when the advice comes from a
health professional. Social workers, including visiting nurses, those who work with older adults,
and others may be able to help.
If you have not done so already, it's important to start talking with your loved one about his wishes.
There may come a time when he can't tell the health care team what he needs. Some people
prefer to let their doctor or family members make decisions for them. But often people with
cancer feel better once their wishes are known. Talk with your loved one about what kind of care
he wants. The more you know, the more prepared you'll be.
- Advance directives are legal papers that tell the doctors what to do if your loved one can't tell
them himself. The papers let the patient decide ahead of time how he wants to be treated. They
may include a living will and a durable power of attorney.
- A living will lets people know what kind of medical care patients want if they are unable to
speak for themselves.
- A durable power of attorney for health care names a person to make medical decisions for a
patient when she can't make them herself. This person, chosen by the patient, is called a
health care proxy. It should be a person she trusts to carry out her decisions and preferences.
Setting up an advance directive is not the same as giving up. Making decisions now keeps the
patient in control. This way, his wishes are known and can be followed. This can help 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.
Here are some other legal papers that are not part of the advance directives:
- A will tells how a person wants to divide money and property among heirs (survivors).
- A trust appoints a person the patient chooses to manage his money for him.
- Legal power of attorney appoints a person to make financial decisions for the patient when
he or she can't make them.
Careful planning may reduce the financial, legal,
and emotional burden you may face if your loved
one dies. For many people, it's hard to bring up
these subjects. But talking about them now can help
you avoid problems later.
Maybe you don't feel comfortable bringing up the
subject. Or maybe your family simply doesn't talk
about these things. In either case, seek help from a
member of the health care team. They may be able
to help your loved one and your family understand
the importance of talking about these issues early.
- Clearing up insurance issues. Contact the health
insurance company if the patient decides to try a
new treatment or 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.
- 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.
- 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.
A Checklist for Organizing
Your Loved One's Affairs |
- If your loved one can't physically
gather important papers, have her
make a list of where you can
find them.
- Keep papers in a fireproof box or
with a lawyer.
- If your loved one keeps important
papers in a safe deposit box, he
should make sure that a trusted
family member or friend has
access to it.
- Although original documents are
needed for legal purposes, she
should give family members
photocopies.
A worksheet of personal affairs may be found
below 8. You can use it as a guide to the
types of papers your family will need.
|
Talking with Family and Friends
"My brother does not 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
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.
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.
Sometimes 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.
"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
Bringing up difficult 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:
- Practice what you'll say in advance.
- Find a quiet time. Ask if it's an okay time to talk.
- Be clear on what your aims are. What do you
want as the result?
- Speak from your heart.
- Allow time for your loved one to talk. Listen and
try not to interrupt.
- Don't feel the need to settle things after one talk.
- You don't always have to say, "It'll be okay."
"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.
Words to Try* |
When You Think You Want to Say:
|
Try This Instead:
|
Dad, you are going to be just fine.
|
Dad, are there some things that worry you?
|
Don't talk like that! You can beat this!
|
It must be hard to come to terms with all this.
|
I can't see how anyone can help.
|
We will be there for you always.
|
I just can't talk about this.
|
I am feeling a little overwhelmed right now.
Can we take this up later tonight?
|
What do the doctors know? You might live
forever.
|
Do you think the doctors are right? How does
it seem to you?
|
Please don't give up. I need you here.
|
I need you here. I will miss you terribly.
But we will get through somehow.
|
There has to be something more to do.
|
Let's be sure to get the best of medical
treatments, but let's be together when we
have done all we can.
|
Don't be glum. You'll get well.
|
It must be hard. Can I just sit with you for
a while?
|
* From Lynn, J. and J. Harrold. 1999. Handbook for Mortals: Guidance for People Facing Serious Illness. Oxford University
Press: New York, NY. Reprinted with permission.
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*
Understand Your Children's Actions and Feelings
Children react to their loved one's cancer in many
different ways. They may:
- Be confused, scared, angry, lonely,
or overwhelmed
- Be scared or unsure how to act when they
see the treatment's effects on the patient
- Act clingy or miss all the attention they
used to get
- Feel responsible or guilty
- Get angry if they're asked to do more
chores around the house
- Get into trouble at school and neglect
their homework
- Have trouble eating, sleeping, keeping up
with schoolwork, or relating to friends
- Be angry that someone else is taking care
of them now
No matter how your children are reacting, it's usually easier to deal with their feelings before
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.
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.
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
things you might want to say. They are fine for children of any age.
- "No matter what happens, you will always be taken care of."
- "Nothing you did caused the cancer. And there is nothing you can do to take it
away either."
- "People may act differently around you because they're worried about you or worried
about all of us."
- "You can ask me anything anytime."
- "Are you okay talking with me about this? Or would you rather talk to Mrs. Jones at school?"
- "It is okay to be upset, angry, scared, or sad about all this. You may feel lots of feelings
throughout this time. You'll probably feel happy sometimes, too. It's okay to feel all
those things."
Encourage 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,
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.
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.
Teens may ask very tough questions, or questions for which
you don't have answers. They may ask the "what if" questions
and what cancer means for the future. As always, keep being
honest with them. Even more important, listen to what they
have to say. As with adults, sometimes it's the listening that
counts, not the words you speak to them.
Older children, especially teenagers, may feel uncomfortable
sharing their feelings with you. They may try to ignore or
avoid topics. Encourage them to talk with others. Also let
them know that it's okay if they don't know what they're
feeling right now. Many older children also find comfort in
just spending time together, without talking about the
situation. Hugs and letting your children know that you
understand can help.
With teenagers, problems may be less obvious or more complicated than with younger children.
Here are some things to keep in mind:
- Teens are supposed to be starting to be more independent from their families. Cancer
makes this harder to do, leading some teens to act out or withdraw.
- Teens may give off the message of "leave me alone" when they still need and want your
attention and support.
- Being a teen under normal circumstances is stressful. Some moods you see may have
nothing to do with the family illness.
- Teens want to feel normal. Make sure they have time for regular activities.
- Keep the communication lines open and involve 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.
If your children don't live with the person who has cancer, it's helpful to prepare them before they
visit. The decision of whether or not to let them visit is up to you, your loved one, and perhaps
other family members. However, children should have the choice about whether or not they want
to go see the patient. If she is in a hospital or other facility, explain what the area and the room
look like. Tell them who might be there and what they might see. Also explain gently if her
physical condition or personality has changed.
For a younger child, you might say something like this:
- "Grandma is very sick. When you see her, she will be in bed. She is a little bit smaller, but
all of her is still there. She also doesn't have any hair on her head - kind of like Daddy."
- "Mom may be sleeping while you're there. Or she may be awake but won't talk because
she's resting. But she'll know and be happy that you're there. She loves you!"
- "Don't worry if you 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.
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.
"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
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 up front, "I know we can't solve this
today. But I'd like to just talk some about how it's going and how we're feeling."
Topics to explore may include how each person:
- Copes with change and the unknown
- Feels about being a caregiver or being cared for
- Handles changing roles in the relationship
or home
- Would like to be connected to one another
- Sees what issues may be straining the
relationship
- Feels, or would like to feel, cared for and
appreciated
- Feels thankful for the other person
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.
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.
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.
You may find that your sex life with your partner is different
than it used to be. Many things could be affecting it:
- Your partner is tired, in pain, or uncomfortable
because of the treatment.
- You're tired.
- Your relationship feels distant or strained.
- You or your partner may not be comfortable with
the way he or she looks.
- You may be afraid of hurting your partner.
- Your partner's treatment might be affecting his or
her interest in sex or ability to perform.
You can still have an intimate relationship in spite of these
issues. Intimacy isn't just physical. It also involves feelings.
Here are some ways to keep your intimate relationship:
- Talk about it. Choose a time when you both
can talk. Focus on how you can renew your
connection.
- Try not to judge. If your partner isn't performing,
try not to read meaning into it. Let your partner
tell you what he or she needs.
- Make space. Protect your time together. Turn off
the phone and TV. If needed, find someone to
take care of the kids for a few hours.
- Reconnect. Plan an hour or so to be together
without trying to have sex. For example, you may
want to play special music or take a walk. Take it
slow. This time is about reconnecting.
- Try new touch. Cancer treatment or surgery can
change your partner's body. Areas where touch
used to feel good may now be numb or painful.
For now, you can figure out together what kind
of touch feels good, such as holding, hugging,
and cuddling.
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
|
Any problems your family may have had before the cancer diagnosis are likely to be more intense
now. This is true whether you are caring for a young child, an adult child, a parent, or a spouse.
Your caregiver role can often trigger feelings and role changes that affect your family in ways you
never expected. And relatives you don't know very well or who live far away may be present more
often, which may complicate things.
It's very common for families to argue over a number of things at this time. These might include:
- Treatment options for their loved one or whether to continue treatment at all
- When to use hospice care
- What treatment the patient desires
- Feelings that some family members help more than others
While everyone may be trying to do what's best for your loved one, some family members may
disagree as to what this means. Everyone brings their own set of beliefs and values to the table,
which makes these decisions hard. It is often during these times that families ask their health care
team to hold a family meeting.
"My sisters keep hoping for
the magic bullet. I don't
know how to get them to
understand how serious
things are."
- Verdell
Family meetings are necessary throughout cancer care. They become even more important as
cancer progresses. In a family meeting, the health care team and family meet to discuss care. You
can ask a social worker or counselor to be there if needed. Talk with your loved one to see if he
wants a family meeting. Ask if he would like to be involved. Meetings can be used to:
- Have the health care team explain the overall goals for care.
- Let the family state their wishes for care.
- Give everyone an open forum in which to express their feelings.
- Clarify caregiving tasks.
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.
"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
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. Some people have said:
"We have a problem with a member of my husband's family. She doesn't live here and
keeps questioning all our decisions. It's gotten so bad that we've had our doctor explain to
her that she's not here all day, and therefore, doesn't understand the situation. She has
been a real pain."
"I feel like people really want him to do the treatment they are suggesting, rather than
what we feel is best. It's making this harder than it needs to be."
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.
Caring for Yourself
"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
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:
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.
"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
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.
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.
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
Do You Need Help with Depression or Anxiety
for some warning signs of
depression.
"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
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.
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.
"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
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.
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 6 for resources you can use to connect with others.
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.
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".) 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.
"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
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.
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.
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.
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.
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.
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.
"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
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.
"I get tired and angry
because I run myself ragged
all day. Then I feel guilty
for feeling this way because
I am not the sick person.
Some days, though, I just
can't help it. This can seem
like a thankless job that I
didn't sign up for."
- Hao
If you are feeling guilty, here are some things you can do:
-
Let go of mistakes. You can't be perfect. No one is. The best we can do
is learn from our mistakes and move on. Continue to do the best you can. And
try not to expect too much from yourself.
-
Put your energy into the things that matter to you. Focus on the things
you feel are worth your time and energy. Let the other things go for now. For
example, don't fold the clothes when you're tired. Go ahead and rest instead.
-
Forgive yourself and others. Chances are good that people are doing what
they can. That includes you. Each new moment and new day gives you a chance to
try again.
"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
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.
"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
Many caregivers say that they wish they had gotten respite help sooner. Some
say that they waited out of pride or guilt. Others just didn't think of it
earlier.
Respite providers spend time with the patient so you can rest, see friends, run
errands, or do whatever you'd like to do. Respite services can also help with
the physical demands of caregiving, like lifting your loved one into bed or a
chair. If this service sounds useful, you may want to:
-
Talk with your loved one about having someone come into your home to help out
from time to time. If she seems to resist this request, you may want to ask a
friend or family member to help explain why this could help both of you.
-
Get referrals from friends or health care professionals. Your local agency on
aging should also have suggestions.
-
Ask the respite helpers what types of tasks they do.
You can get respite help from family, friends, neighbors, coworkers, members of
your faith community, government agencies, or nonprofit groups. Whatever you do,
remember that you haven't failed as a caregiver if you need help and relief.
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.
|
"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
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 9".)
Taking time to recharge your own body, mind, and spirit can help you be a
better caregiver. And if you are sick or injured yourself, it's even more
important that you take care of yourself, too. You may want to think about:
-
Finding nice things you can do for yourself - even for a few minutes
-
Finding nice things others can do or set up for you
-
Finding new ways to connect with friends
-
Taking larger chunks of time that'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.
"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
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:
-
What are the happiest and saddest times we have shared together?
-
What are the defining or most important moments of our life together?
-
What have we taught each other?
-
How has being a caregiver affected my life?
Once you get over the shock and fear, 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.
"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
Some things you and your loved one can do to celebrate your life together are:
-
Make a video of special memories.
-
Review or arrange family photo albums.
-
Chart or write down your family's history or family tree.
-
Keep a daily journal of feelings and experiences.
-
Make a scrapbook.
-
Help write notes or letters to other friends and family members.
-
Read or write poetry.
-
Create artwork, do knitting, or make jewelry.
-
Choose meaningful objects or mementos together to give to others.
-
Write down or record funny or meaningful stories from the past.
You, the patient, and other family members can do whatever brings joy and
meaning to your lives. Your loved one may even decide to make what is called an
"ethical will." It's not a legal paper. It's something a person writes to share
with people he or she cares about. Many ethical wills contain the person's
thoughts on their values, memories, and hopes. They may also contain the
lessons learned in life or other things that are meaningful.
"I have the utmost respect
for people who've been
through and are going
through the same thing that
I am. It takes a special
person to care for somebody.
And you know, it really does
change your life for the
better."
- Steve
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.
Being spiritual is very personal and means something different for everyone. As
you look at life in new ways, you may find a spiritual path helpful. Some ways
to add spirituality to your daily life include:
-
Reading religious or spiritual books, listening to spiritual music, or watching
related videos or TV programs
-
Keeping an uplifting quote handy
-
Praying or meditating
-
Talking with a member of your faith community or someone else with a spiritual
nature
-
Visiting a place of worship
-
Finding a special place where you find beauty or a sense of calm
-
Asking the hospital social worker or recreation therapist to suggest relaxing
music
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 happens after death?
-
What is the meaning of 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 cannot be answered?
-
Who or what can support me spiritually during this time?
|
You may find yourself so busy and concerned about your loved one that you don't
pay attention to your own health. But it's very important that you take care of
yourself. Taking care of yourself will give you strength to help others.
Added stress and daily demands often add to any health problems caregivers
already have. They also may have one or more of the problems below:
-
Fatigue (tiredness)
-
Sleeping problems
-
Weaker immune system (poor ability to fight off illness)
-
Slower healing of wounds
-
Higher blood pressure
-
Changes in appetite and/or weight changes
-
Headaches
-
Anxiety, depression, or other mood changes
These ideas for taking care of yourself may sound easy. But they are a
challenge for most caregivers. You'll need to pay attention to how you're
feeling, in both body and mind. Even though you are putting your loved one's
needs first, it's important to:
Keep up with your own checkups, screenings, and other medical needs.
Try to remember to take your medicines as prescribed. Ask your doctor to give
you extra refills to save trips. Find out if your grocery store or pharmacy
delivers.
Try to eat healthy meals. Eating well will help you keep up your strength. If
your loved one is in the hospital or has long doctor's appointments, bring
easy-to-prepare food from home. For example, sandwiches, salads, or packaged
foods and canned meats fit easily into a lunch container.
Get enough rest. Listening to soft music or doing breathing exercises may help
you fall asleep. Short naps can energize you if you aren't getting enough
sleep. But talk with your doctor if lack of sleep becomes an ongoing problem.
Exercise. Walking, swimming, running, or bike riding are only a few ways to get
your body moving. Any kind of exercise (including working in the garden,
cleaning, mowing, or going up stairs) can help you keep your body healthy.
Finding at least 15-30 minutes a day to exercise may make you feel better and
help manage your stress.
Make time for yourself to relax. You may choose to stretch, read, watch
television, or talk on the phone. Whatever helps you unwind, you should take
the time to do it.
|
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.
|
* The Hospice of the Florida Suncoast. "Caring For Yourself While Caring For
Others" (available at www.thehospice.org/rmvbarriers.htm)
Adapted with permission.
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 |
Body Changes |
-
A feeling of being worried, anxious, "blue," or depressed that does not go away
-
Feeling guilty or worthless
-
Feeling overwhelmed, out of control, or shaky
-
Feeling helpless or hopeless
-
Feeling grouchy or moody
-
Crying a lot
-
Focusing on worries or problems
-
Thinking about hurting or killing yourself.
-
Not being able to get a thought out of your mind
-
Not being able to enjoy things (such as food, being with friends, sex)
-
Avoiding situations or things that you know are really harmless
-
Having trouble concentrating or feeling scatterbrained
-
Feeling that you are "losing it"
|
-
Gaining or losing weight without meaning to
-
Trouble sleeping or needing more sleep
-
Racing heartbeat
-
Dry mouth
-
Sweating a lot
-
Upset stomach
-
Diarrhea (loose, watery stools)
-
Slowing down physically
-
Fatigue (tiredness) that won't go away
-
Headache or other aches and pains
|
|
|
Reflection
"If you find it in your heart
to care for somebody else,
you will have succeeded."
- Maya Angelou
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.
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)
Personal Affairs Worksheet
By filling out this worksheet, you can help family members
deal with your personal affairs after you're gone. Be sure to let
your loved ones know about this list. It will help them cope
with your death and find comfort in knowing your needs and
wishes were 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
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
All other lenders
Contact Information
What Needs to be Done
Employer
Contact Information
What Needs to be Done
Faith or spiritual leader/organization
Contact Information
What Needs to be Done
Safety deposit box keys and box location
Safe, 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.
Resources
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.
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 Serivce) 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.
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 |
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.
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.
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.
American Cancer Society
National Cancer Information Center
Available to answer questions 24 hours a day, 7 days a week.
CancerCare
Offers free support, information, financial assistance, and
practical help to people with cancer and their loved ones.
Family Caregiver Alliance
Family Caregiver Alliance addresses the needs of families and friends who provide long-term care
at home.
Gilda's Club, Inc.
Gilda's Club provides social and emotional support for cancer patients and their families and friends.
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.
NeedyMeds
The NeedyMeds Web site lists medicine assistance programs available from drug companies.
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
Provides information on cancer support, employment,
financial and legal issues, advocacy, and related issues.
National Family Caregivers Association (NFCA)
NFCA provides information, education, support, public awareness, and advocacy for caregivers.
National Hospice and Palliative Care Organization
Provides information on hospice care, local hospice
programs, state specific advance directives, and locating a
local health care provider. They also provide education and
materials on palliative and end of life issues, as well as links
to other organizations and resources.
Patient Advocate Foundation
Offers education, legal counseling, and referrals concerning
managed care, insurance, financial issues, job discrimination,
and debt crisis matters.
The Well Spouse Foundation
The foundation provides support to wives, husbands, and partners of chronically ill and/or
disabled persons.
The Wellness Community
Provides free psychological and emotional support to cancer
patients and their families.
For More Information
This booklet is only one of many free booklets for
people with cancer. Here are some others you and
your loved ones may find useful:
These booklets are available from the National
Cancer Institute (NCI.) To learn more about the
specific type of cancer you have or to request any of
these booklets, visit NCI's Web site (www.cancer.gov).
You can also call NCI's Cancer Information Service
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. |
Glossary Terms
palliative care (PA-lee-uh-tiv...)
Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of palliative care is to prevent or treat as early as possible the symptoms of a disease, side effects caused by treatment of a disease, and psychological, social, and spiritual problems related to a disease or its treatment. Also called comfort care, supportive care, and symptom management.
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Table of Links
1 | http://cancer.gov/cancertopics/Facing-Forward-When-Someone-You-Love-Has-Complet ed-Cancer-Treatment |
2 | http://cancer.gov/cancertopics/When-Someone-You-Love-Is-Treated |
3 | http://cancer.gov/cancertopics/youngpeople |
4 | http://cancer.gov/clinicaltrials/resources/what-to-know-about-trials |
5 | http://cancer.gov/cancertopics/When-Someone-You-Love-Has-Advanced-Cancer/page12 |
6 | http://cancer.gov/cancertopics/When-Someone-You-Love-Has-Advanced-Cancer/page13 |
7 | http://cancer.gov/cancertopics/factsheet/Support/financial-assistance |
8 | http://cancer.gov/cancertopics/When-Someone-You-Love-Has-Advanced-Cancer/page11 |
9 | http://cancer.gov/cancertopics/When-Someone-You-Love-Has-Advanced-Cancer/page10 |
10 | http://cancer.gov/cancertopics/factsheet/support/organizations |
11 | http://cancer.gov/cancertopics/chemotherapy-and-you |
12 | http://cancer.gov/cancertopics/advancedcancer |
13 | http://cancer.gov/cancertopics/eatinghints |
14 | http://cancer.gov/cancertopics/paincontrol |
15 | http://cancer.gov/cancertopics/radiation-therapy-and-you |
16 | http://cancer.gov/cancertopics/takingtime |
17 | http://cancer.gov/cancertopics/thinking-about-CAM |
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