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When someone is told they have cancer their life changes. But
the patient is only one of the people affected by the cancer. Life also
changes for the person who helps the patient get through this
experience -- the caregiver. The caregiver becomes a key part of the
patient's care. Good, reliable caregiver support is crucial to the
physical and emotional well-being of people with cancer.
Here we will give you some idea of what to expect if you
become a caregiver for a person with cancer. We 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 helps the person with cancer
most often -- without being paid to do so. Most often the main
(primary) caregiver is a spouse, partner, or an adult child. When
family is not around, 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 sicker people are being cared for at home. There
has also been a shift in cancer treatment. Now, much more is done in
outpatient treatment centers. This has led to a need for the family to
be part of the day-to-day care of the person with cancer. Today,
families provide about 80% of home-care services, and caregivers are
doing things that, until recently, were done by trained health
professionals.
What does a caregiver do?
Caregivers have many roles. The roles change as the patient's
needs change throughout cancer treatment. Caregivers serve as home
health aides and companions. They may help feed, dress, 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 of the person
with cancer and continue to meet other family members' needs.
As a caregiver, you have huge influence -- both positive and
negative -- on how the cancer patient deals with their illness. Your
encouragement can help the patient stick with a demanding treatment
plan and take other steps 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. You can prioritize and manage
problems best by first 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 by the family and the patient. The caregiver can:
- Help address their concerns by pointing out that the
patient will need to be in the hospital for only a short time until
antibiotic treatment has the infection under control.
- Make sure that the patient has everything they need while
in the hospital, including doctor's prescriptions for non-cancer
related medicines she may be taking at home, such as thyroid or blood
pressure medicine.
- Call all the doctors involved in the patient's care and
tell them about the infection and hospitalization.
- Check that arrangements have been made for the patient to
stay on 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. This kind of help is a valuable, reassuring
sign for the patient that this short-term problem can be managed and
solved.
Caregivers are part of 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 drugs, 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 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 they are
dealing with the physical, emotional, and social effects of cancer and
treatment. Your job is to involve the patient as much as possible, so
they know they are doing their part to get better and not be a burden
to you. Below are some things you can try to do to keep the patient
involved:
- Help them live as normal a life as possible. To do this you
might start by helping them decide what activities are most important.
They might put aside those that are less important in order to do the
things they enjoy most.
- Encourage them to share feelings and support efforts to
share. For example, if they begin talking to you about their feelings
about cancer, don't change the subject, but rather listen and let them
talk. You might want to share how you feel, too.
- Let them know you are available, but don't press issues.
This might involve something that they are trying to do, such as dress
themselves. They may be struggling, but it is important to them that
they be able to do this. You may want to do it for them, but don't. Let
them decide when help is needed.
- Remember that people communicate in different ways. Try
sharing by writing or by using gestures, expressions, or touch.
Sometimes, it may be really hard to say what you are feeling, but a
gesture such as holding hands might tell them 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. Try to be flexible with your wants and needs.
- Respect the need to be alone. Sometimes, we all need time
alone. Respect this.
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. If they keep acting very sad or withdrawn, you may want to talk
to the cancer care team about what might be causing it and what can be
done. (See our information, Anxiety, Fear, and Depression.)
What does 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 that
person. You may see it as a meaningful role that allows you to show
your love and respect for the person. It may also feel good to be
helpful and know that you are needed by a loved one.
You may find that caregiving enriches your life. You may feel
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. Through a support group, you may get to know people
who have faced similar problems. 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 good 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.
What if I don't want to be the caregiver?
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?" You may feel that the role was
dumped on you without your consent. 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 little or 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 decide on your limits
and make them known as soon as you can -- before the demands of
caregiving become a problem. That way, you and the patient can get the
help needed and if you have to, 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 start that the caregiver role will
be shared. It also may be better to find someone else to act as the
primary caregiver.
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 can 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. But 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. Speak up 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 they can.
If they are overwhelmed with decisions, give them simpler choices by
saying, "Would you prefer chicken or fish for dinner?" or "Would you
rather 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 them 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, so that both
you and the patient can get the help you need.
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 driving or arranging 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 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. If you can't or don't want to stop
working, you may be able to take unpaid time off under the Family and
Medical Leave Act. Whether you will be able to do this depends on your
job and your kinship to the person you care for. (See our information Family and Medical Leave Act.)
You may also find that your job treats you differently because of the
time you must spend on caregiving tasks. 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.
They are better able to see the positive aspects of the role, too. They
are also better able to see the value of their care.
Research has shown that having the support of friends and
family is key to both the person with cancer and the caregiver.
Caregivers often feel tired, 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, depression, 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. Be sure 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. It pays to 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:
- Things that involve other people, such as having lunch with
a friend.
- Things that give you a sense of accomplishment, like
exercising or finishing a project.
- Things that make you feel good or relaxed, like watching a
funny movie or taking a walk.
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.
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. Good communication can help you
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 these meetings as updates and care-planning sessions. Include the
patient.
- Ask family and friends when they can help and what jobs
they think they can do. You may also contact a person with a certain
request. Be 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 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 a 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 -- decisions that you and they can live with. But
sometimes you will feel that you could have handled a situation better.
At these times, it is important not to blame yourself. 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 about it. Try 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 take on this job, which
can be quite difficult and stressful.
As a caregiver, you have an important and unique role in
helping your loved one through their cancer experience. The American
Cancer Society can offer you information, resources, and support. Call
us at 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,
1-800-227-2345.
- After Diagnosis: A Guide for Patients and Families
- Where to Turn - Patient and Family Support Program
(brochure)
Books
The following books are available from the American Cancer
Society. Call us at 1-800-227-2345 to ask about costs or to place your
order:
National
organizations and Web sites*
Along with the American Cancer Society, other sources of
information and support include:
American
Association for Marriage and Family Therapy
Telephone: 703-838-9808
Web site: www.aamft.org
Sponsors www.therapistlocator.net
which provides referrals to local marriage and family therapists. The
site also contains educational materials on helping couples live with
illness, as well as other issues related to families and health.
Cancer Hope
Network
Toll-free number: 1-877-467-3638 (1-877-HOPENET)
Web site: www.cancerhopenetwork.org
Volunteers provide free and confidential one-on-one telephone support
for people with cancer and family members.
Cancer Legal
Resource Center
Toll-free number: 1-866-843-2572 (1-866-THE-CLRC)
TDD: 1-213-736-8310
Web site: www.cancerlegalresourcecenter.org
A non-profit program offering free and confidential information and
resources on cancer-related legal issues to cancer survivors, their
families, friends, employers, health care professionals, and others
coping with cancer.
CancerCare
Toll-free number: 1-800-813-4673 (1-800-813-HOPE)
Web site: www.cancercare.org
Offers free professional support services, including telephone
counseling, online support groups, and educational materials, to people
with cancer, their loved ones, and caregivers.
Family Caregiver
Alliance (FCA)/National Center on Caregiving
Toll-free number: 1-800-445-8106
Web site: www.caregiver.org
Provides information and resources on long-term caregiving.
Gilda's Club
Toll-free number: 1-888-GILDA-4U
Web site: www.gildasclub.org
A Web site of welcoming communities of free support for everyone living
with cancer - men, women, teens, and children - along with their
families and friends that provides networking and support groups,
workshops, education, and social activities.
National
Alliance for Caregiving (NAC)
Toll-free number: 1-800-896-3650
Web site: www.caregiving.org
A national coalition of organizations focused on caregiving issues;
provides www.familycaregiving101.org, a resource for answers, new
ideas, and helpful advice for caregivers.
National Cancer
Institute
Toll-free number: 1-800-422-6237 (1-800-4-CANCER)
Web site: www.cancer.gov
A good source of up-to-date information about cancer for patients and
their families.
National Family
Caregivers Association (NFCA)
Toll-free number: 1-800-896-3650
Web site: www.thefamilycaregiver.org
A national, non-profit, membership association whose mission is to
support, educate, and empower family caregivers to help them become
their own advocate. Offers www.lotsahelpinghands.com
-- a volunteer coordination service for friends, family, colleagues,
and neighbors to assist loved ones in need. The program utilizes a
chosen "coordinator", and helpers sign up on an easy-to-use, private
group calendar to assist with meals, rides, and other tasks necessary
for life to run smoothly during a crisis.
Well Spouse
Association (WSA)
Web site: www.wellspouse.org
A national, non-profit membership organization (dues are charged) which
provides emotional support to spouses and partners of chronically ill
and/or disabled people.
*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 1-800-227-2345 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.
Rivera HR. Depression symptoms in cancer caregivers. Clin J Oncol Nurs.
2009;13(2):195-202.
Last Revised: 04/30/2009
Last Medical Review: 04/30/2009
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