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When someone is diagnosed with cancer their life changes. But
the patient is only one of the people affected by cancer. Life also
changes for the person who helps the patient get through this
experience -- the primary (main) caregiver. The caregiver becomes a
valuable participant in the patient's care. Good, reliable caregiver
support is crucial to the physical and emotional well-being of people
with cancer.
This document will give you some idea of what to expect if you
become a caregiver for a person with cancer. It will also offer some
suggestions for ways to take care of yourself during this time.
Who is a caregiver?
A caregiver is the person who consistently helps the person
with cancer, without being paid to do so. Most often the primary (main)
caregiver is a spouse, partner, or an adult child. When family is not
available, close friends, co-workers, or neighbors may fill this role.
Why is a caregiver needed?
Today people spend far less time in the hospital than in the
past. This means that people who are more sick are being cared for at
home. There has also been a shift in cancer care so that less treatment
is given in the hospital and more is done as an outpatient or in
ambulatory (walk-in) treatment centers. This has led to an increase in
family involvement in the day-to-day care of the person with cancer.
Caregivers are taking on roles that, until recently, were carried out
by trained health professionals.
What might it feel like to be a caregiver?
Despite the sadness and shock of having a loved one with
cancer, many people find personal satisfaction in caring for a person
in their time of need. You may see it as a meaningful role that allows
you to show your love and respect for the person. It also feels good to
be helpful and feel needed by a loved one.
Or you may feel that caregiving enriches your life. You may
find a deep sense of satisfaction, confidence, and accomplishment in
caring for someone. You may also learn about inner strengths and
abilities that you didn't even know you had and find a greater sense of
purpose for your own life.
The caregiving role can open up doors to new friends and
relationships, too. You may get to know people who have faced similar
problems, such as in a support group. Caregiving can also draw families
together and help people feel closer to the person who needs care.
Caring for someone going through cancer treatment is a
demanding role, but being successful at it can give you a sense of
meaning and pride. These positive feelings can give you the strength
and endurance to continue in the role for as long as you are needed.
Still, others may feel less positive about the caregiving
role. It is quite normal to feel overwhelmed, burdened, and even
trapped while caregiving. If your family has had troubled relationships
in the past, you may wonder "why me?" The role may have been thrust
upon you and you may feel unprepared or even unable to manage the
responsibilities and feelings that go with it. You may feel pressure
from family members, friends, and members of the health care team to
provide care, despite having no desire or ability to do so.
If you became a caregiver because of other people's wishes,
you need to think about how you feel about being pressured into
caregiving. Mixed feelings at the onset of this role can lead to a
greater sense of frustration later on. You should make your limits
known as soon as you can -- before the demands of the role become a
problem. That way, you and the patient can get the help needed and, if
necessary, make other plans for care. In situations like this, it may
help to find someone to help you with caregiving so that you know from
the beginning that the caregiver role will be shared. It also may be
necessary to find someone else to act as the primary caregiver.
What does a caregiver actually do?
Caregivers have many roles. The roles change as the patient's
needs change throughout cancer treatment. Caregivers function as home
health aides and companions. They may help feed, clothe, and bathe the
patient. Caregivers arrange schedules, manage insurance issues, and
provide transportation. They are legal assistants, financial managers,
and housekeepers. They often have to take over the duties the person
with cancer performed and continue to meet other family members' needs.
As a caregiver, you can have enormous influence -- both
positive and negative -- on how the cancer patient deals with his
illness. Your encouragement can help the patient stick with a demanding
treatment plan and take other steps that are necessary to get well,
like eating nutritious meals or getting enough rest.
Caregivers solve problems
The person with cancer faces many new challenges. As the
caregiver you can help the patient deal with these challenges and get
through any problems that may come up. Prioritizing and managing
problems begins by understanding the problem that needs to be solved,
as well as the desired result. Caregivers who are realistic, but
positive; careful, but creative; and focused, but flexible are sources
of strength and security for cancer patients.
For example, suppose the patient's white blood counts drop,
she develops a fever, and as a result, must be admitted to the
hospital. This can be very upsetting and may be viewed as a setback in
treatment. The caregiver can:
- address this problem by pointing out that this is
only a brief hospitalization that is necessary until the patient has
started antibiotic treatment and the infection is under control
- make sure that the patient has everything she needs
while in the hospital, including doctor's orders for non-cancer related
medicines she may be taking at home, such as thyroid or blood pressure
medicine
- notify all doctors involved in the patient's care
of the current situation
- check that arrangements have been made for the
patient to continue the antibiotics at home or as an outpatient after
leaving the hospital. If daily visits to the outpatient clinic for IV
(intravenous) antibiotics are needed, the caregiver can coordinate
people to help the patient get there and back each day.
These kinds of tasks may be too much for the patient to tackle
while fighting infection, but this kind of help is a valuable,
reassuring sign for the patient that this short-term problem can be
managed and solved.
Caregivers manage the team
The caregiver is part of a health care team made up of the
patient, other family and friends, and the medical staff. As a
caregiver, you may find yourself working closely with the health care
team, giving medicines, managing side effects, reporting problems,
trying to keep loved ones informed of what's happening, and helping to
decide whether a treatment is working.
As part of the team, the caregiver helps to coordinate the
patient's care. Caregivers often have to keep track of prescriptions,
know which tests are to be done, and make sure all involved doctors
know what is going on. They often find themselves preventing mix-ups
and keeping track of reams of paperwork.
A good caregiver is a vital health care resource and often
times the one person who knows everything that is going on with the
patient. Don't be afraid to ask questions and take notes during doctor
visits. Learn who the members of the health care team are and know how
to contact them. Getting the right support and information on how to be
a good caregiver can help both you and your loved one with cancer.
Caregivers involve the patient
Good communication with the person you are caring for is the
most important part of your role. It may be hard for the patient to
take part in daily planning and decision-making because he is dealing
with the physical, emotional, and social effects of cancer and
treatment. Your job is to involve the person as much as possible, so he
knows that he is doing his part to get better and doesn't feel like a
burden to you. Below are some things you can try to do to keep the
patient involved:
- Help him live as normal a life as possible. To
accomplish this you might start by helping him decide what activities
are most important to him and helping him to continue to do those
activities. He might put aside those activities that are less important
in order to do those he enjoys most.
- Encourage him to share feelings and support efforts
to share. For example, if he begins talking to you about how he feels
about his cancer, don't change the subject, but rather listen and let
him talk. You might share how you feel as well.
- Let him know you are available, but don't press
issues. This might involve an activity that he is trying to complete
such as dressing himself. He may be struggling, but it is important to
him that he be able to do this. You may feel that you want to do it for
him, but don't. Let him decide when help is needed.
- Remember that people communicate in different ways.
Try sharing by writing or through gestures, expressions, or touching.
Sometimes, it may be really hard to say what you are feeling, but a
gesture such as holding hands might communicate what you feel.
- Take your cues from the person with cancer. Some
people are very private while others will talk more about what they are
going through. Respect the person's need to share or his need to remain
quiet.
- Be realistic and flexible about what you hope to
talk about and agree on. You may need or want to talk at a time when
the patient does not. Be flexible with your wants and needs.
- Respect the need to be alone. Sometimes, we all
need time to be alone. Respect this need.
You may find that your loved one is acting different--angry,
quiet and withdrawn, or just sad. If you get the feeling that they
aren't talking to you because they want to spare your feelings, make
sure they know that you are always open to listening, even about tough
topics.
What if we can't agree on something
important?
It is good to know that you don't always have to agree. Some
of the decisions and problems that come with a cancer diagnosis can be
very tough and very emotional. Remember to let the person with cancer
make decisions. There are some things you can do to help them make the
best choice.
- Explain your needs and wants clearly while allowing
the patient to do the same. As an example, you may need to do this when
deciding whether to give certain treatments, such as IV antibiotics, at
home or in an infusion center. The patient may want to do this at home
but will need your help. You may need to say "This is too scary for me.
I don't think I can do this at home, but I will make sure you're at the
clinic every day."
- Suggest a trial run or time limit before a final
decision is made. A change in medicines is a good example. "Let's try
this sleeping pill for a few nights and see if it helps you get some
rest. If not, we'll talk to Dr. Smith about trying something else."
- Choose your battles carefully; focus energy and
influence on the issues that count. Try to let the patient make as many
choices as possible. For example, getting in an argument over what
clothes to wear probably isn't the best use of your or her energy.
However, not taking medicines as instructed or not following activity
restrictions may be issues that you cannot ignore. If reasoning with
the patient doesn't work let her know that you are going to inform the
rest of the medical team and get their help -- then do it.
Again, open communication with the person you are caring for
is the most important part of your role. Advocate for the patient and
her needs. Help her get all the information she needs and get input
from other team members, then offer your support and encouragement.
What if the patient won't do anything for
himself?
It is not always needed and may seem hard to do, but sometimes
you might need to set some limits with the cancer patient. For example,
- Figure out what self-care tasks he can safely
perform. Encourage him to do them alone as much as he can.
- Create a climate that supports the sharing of
thoughts and feelings, but encourage the patient to talk about things
other than cancer and illness.
- Let the patient make as many personal choices as he
can. If he is overwhelmed with decisions, give him choices by saying,
"Would you prefer chicken or fish for dinner?" or "Would you prefer to
wear your blue pants or the brown ones?"
- Get others involved if the patient is avoiding
treatments or doing things that are harmful. Family members can be a
strong source of influence. Rally them for support.
- Once a decision is made, accept it and move on. And
if you disagree with the decision that was made, remember that it is
the patient's decision to make. Congratulate him for being able to make
a decision.
Remember that professional help is always available to you. It
is normal to feel frustrated, upset, and stressed when caring for
someone with cancer. Use the resources and services of the health care
team when you need them, too. They can help you find the support you
need, such as home care services or financial assistance.
What about my needs and feelings?
Caring for someone going through cancer treatment can be very
stressful and exhausting. It takes emotional, spiritual, and physical
strength. There is a potential financial burden to caregiving as well.
On top of your normal day-to-day tasks, such as meals,
cleaning, and providing transportation, you will become an important
part of the cancer treatment team. This busy schedule often does not
leave time for caregivers to take care of their own needs. You also may
find that you turn down job opportunities, work fewer hours, or even
retire early in order to meet the demands of being a caregiver. If you
can't or don't want to stop working, you may need to take unpaid time
off under the Family and Medical Leave Act. You may find that your job
treats you differently because of the time you must spend on caregiving
tasks. (You may want to learn whether the Americans with Disabilities
Act applies to your work situation if it becomes a problem.) This can
affect you financially as well as personally.
All these changes can lead to anxiety, hostility, anger,
resentment, frustration, and depression. These are normal feelings that
must be recognized and managed. Ask the health care team about
resources that are available to you and use them. Informed and
supported caregivers can better manage the negative parts of the role
and are better able to see the positive aspects of the role. They are
also better able to appreciate the value of their care.
Research has shown that having the support of friends and
family is critical to both the person with cancer and the caregiver.
Caregivers often tend to feel isolated, depressed, or anxious, and are
less likely to reach out for help. Physical problems such as heart
disease, high blood pressure, sleep problems, increased risk of
infections, and fatigue have been linked with caregiving. You may not
have thought much about it, but while you are helping your loved one,
you must also take care of yourself.
Overwhelming concern for a sick loved one may distract you
from taking care of yourself. You may find there is conflict between
the needs of the patient, your own needs, and the needs of your family.
Many caregivers forget to eat, don't get enough sleep or exercise, and
ignore their own physical health concerns. Remember to make and keep
your own doctor appointments, get enough sleep, exercise, eat healthy
foods, and keep your normal routine as much as you can. It is important
not to feel guilty or selfish when you ask for help or take time for
yourself. By taking care of yourself, you will be better able to take
care of your loved one.
You can begin by setting limits on what you expect from
yourself. Know that caring for someone with cancer can be an
overwhelming job and ask for help before stress builds up. Here are
some ways to take care of your own needs and feelings:
- Plan things that you enjoy. There are 3 types of
activities that you need for yourself: Do things that involve other
people, such as having lunch with a friend. Do things that give you a
sense of accomplishment, like exercising or finishing a project. Do
things that make you feel good or relaxed, like watching a funny movie
or taking a walk.
- Pay attention to these activities. Make an effort
to notice and talk about things you do as they happen during the day.
Watch the news or take time to read the morning paper. Set aside time
during the day, like during a meal, when you do not talk about your
loved one's illness.
- Think about joining a support group for caregivers
or using counseling services. Talk with a nurse or social worker or
contact your local American Cancer Society for services in your area.
The American Cancer Society also has the Cancer
Survivors Network
(CSN), an online community of people whose lives have been touched by
cancer. Through online or in person support groups, people can share
their stories, offer advice, and support each other through shared
experience. There are many cancer organizations that have online ways
for caregivers to connect to education and support resources.
- If you need some time away from work, speak with
your boss or benefits office. If your workplace has an Employee
Assistance Program, look into what it offers. Some offer counseling
services for money concerns, stress, and depression.
- Most importantly, don't try to do it all yourself.
Caregiving alone for any period of time is not realistic. Reach out to
others. Involve them in your life and in the things you must do for
your loved one.
When others want to help
Although caring for someone with cancer can be fulfilling, it
can also be demanding and stressful. Communication can help to work
through tough times, but almost always there is just too much for one
person to do. Asking for help or allowing others to help can take some
of the pressure off and allow you time to take care of yourself. Often
family and friends want to help but may not know how or what you need.
Here are some tips for working with family and friends:
- Look for areas where you need help. Make a list or
note them on a calendar.
- Hold regular family conferences to keep everyone
involved. Use them as updates and care-planning sessions. Include the
patient.
- Ask family and friends about when they can help and
what jobs they think they can do. You may also contact a person with a
certain request, being very clear about what you need.
- As you hear back from each person, note it on your
list to make sure they have taken care of what you needed.
There are many online resources that can help you manage your
job as caregiver, such as the American Cancer Society's Cancer
Survivors Network, Gilda's Club, and others listed in the "National
organizations and Web sites" section. These also offer
support to
people with a family member who has cancer. Some sites also offer other
features, such as group calendars to organize helpers and areas to
create personal Web sites that loved ones can access for updates.
Examples of these are caringbridge.org,
lotsahelpinghands.com,
and
thepatientpartnerproject.org.
Taking full advantage of the resources
available to you is another way you can take care of yourself.
What if I fail?
No matter what you do, you will very likely come to some point
where you feel that you have failed your loved one in some way. It
seems obvious that as a caregiver, you do the best you can. You try to
include the patient, other family, and loved ones in important
discussions. You always try to make decisions that are in the patient's
best interest, that you and they can live with. But sometimes you will
recognize that you could have handled a situation better. At these
times, it is important not to blame yourself, but to find a way to
forgive yourself and move on. It helps to bear in mind that you will
keep making mistakes, and try to keep a sense of humor and balance
about it. When you stop to think about it, it helps to recognize those
things that you do well, which can be easy to overlook. It also helps
to keep in mind why you chose to do this job, which can be quite
difficult and stressful.
As a caregiver, you have an important and unique role to play
in helping your loved one through their cancer experience, and the
American Cancer Society can offer you information, resources, and
support. Call us at 1-800-ACS-2345 (1-800-227-2345) any day and any
time you need help for yourself or your loved one.
More information from your American Cancer
Society
The following related information may also be
helpful to you. These materials may be ordered from our toll-free
number, 1-800-ACS-2345 (1-800-227-2345).
- After Diagnosis: A Guide for Patients and Families
(available in
Spanish)
- When Your Brother or Sister Has Cancer (booklet)
- Where to Turn - Patient and Family Support Program
(brochure)
The following books are available from the American Cancer
Society. Call us at 1-800-ACS-2345 (1-800-227-2345) to ask about costs
or to place your order:
National
Organizations and Web Sites*
In addition to the American Cancer Society, other sources of
patient information and support include:
American Association for Marriage and Family Therapy
Telephone: 1-703-838-9808
Web site: www.therapistlocator.net
Cancer Hope Network
Toll-free number: 1-877-467-3638
Web site: www.cancerhopenetwork.org
Cancer Legal Resource Center
Toll-free number number: 1-866-843-2572
(1-866-THE-CLRC)
Web site: www.cancerlegalresourcecenter.org
CancerCare
Toll-free number: 1-800-813-4673
(1-800-813-HOPE)
Web site: www.cancercare.org
Family Caregiver Alliance (FCA)/National Center on Caregiving
Toll-free number: 1-800-445-8106
Web site: www.caregiver.org
Gilda's Club
Web site: www.gildasclub.org
National Alliance for Caregiving (NAC)
Web site: www.caregiving.org
National Cancer Institute
Toll-free number: 1-800 422-6237 or 1-800-4-CANCER
Web site: www.cancer.gov
National Family Caregivers Association (NFCA)
Toll-free number: 1-800-896-3650
Web site: www.thefamilycaregiver.org
Well Spouse Association (WSA)
Toll-free number: 1-800-838-0879
Web site: www.wellspouse.org
*Inclusion on
this list does not imply endorsement by the
American Cancer Society.
No matter who you are, we can help. Contact us anytime, day or
night, for information and support. Call us at 1-800-ACS-2345 or
visit
www.cancer.org.
References
Given BA, Given CW, Kozachik S. Family Support in Advanced
Cancer. CA: A Cancer
Journal for Clinicians. 2001;51: 213-231.
Glajchen M. The Emerging Role and Needs of Family Caregivers
in Cancer Care. The
Journal of Supportive Oncology. 2004;2: 145-155.
Mellon S, Northouse LL, Weiss LK. A Population-Based Study of
the Quality of Life of Cancer Survivors and Their Family Caregivers.
Cancer Nursing.
2006; 29:120-131.
Nijboer C, Triemstra M, Tempelaar R, Mulder M, Sanderman R,
van den Bos GAM. Patterns of Caregiver Experiences among Partners of
Cancer Patients. Gerontologist.
2000;40, 738-746.
Revised: 04/15/08
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