Help for the Caregiver

Key Points for This Section

Caregivers have a very hard job and it's normal to need help.
Support services can be chosen to help where the caregiver needs it.
o Education and Information
o Coping Skills
o Counseling
o Family eetings
o !ome Care !elp
o !ospice Care for the Cancer "atient
Caregivers have a very hard job and it's normal to need help.
#lthough caregiver assessments are used to plan support for the family caregiver$ they are
not always done. It's important for caregivers to ask for help when they need it. any people
who were once caregivers say they did too much on their own. Some wished that they had
asked for help sooner. %he best time to find out where to get help is when the patient
is diagnosed with cancer. #ll through caregiving$ it&s important to watch for signs of caregiver
strain and get help right away. Caregivers who take care of their own needs have the
strength to carry on and be a better caregiver.
Support services can be chosen to help where the caregiver needs
it.
Support for the caregiver may include education and information$ coping
skills$ counseling andpsychotherapy$ family meetings$ home care help$ and hospice care.
ducation and !nformation
Family caregivers usually have many 'uestions and feel unsure about some things when
they begin caregiving. Information and education can help caregivers feel less stressed and
more comfortable in their role. "rograms that introduce patients and their caregivers to new
cancer facilities and services may help.
Since cancer treatment can last for a long time and the disease goes through many
changes$ the kind of information caregivers need changes over time. Important times for the
caregiver to receive information include the following(
#t diagnosis.
)hen the patient is in the hospital.
)hen care at home begins.
#t the start of new treatments.
If the cancer recurs *comes back+.
#t the end of life.
%here are many ways caregivers can get information(
Call a cancer information specialist at ,-.//-0-C#1CE2 *,-.//-033-4356+.
Search the Internet.
#sk 'uestions.
2ead booklets$ pamphlets$ fact sheets$ and information cards.
7se touch-screen and other computer information systems at hospitals and doctor
offices.
8earn from 9:9s that teach caregiving skills.
Caregivers often want to know facts about the cancer$ caregiving skills$ and how to
manage symptomsand side effects.
"acts about the cancer
o !ow the cancer will change over time.
o Symptoms the patient may have.
o )hat the treatments may be.
o Side effects that may be caused by the cancer or the treatments.
#hat the caregiver is e$pected to do
Caregivers report that they learn most of their caregiving skills by trial and error and would
like more information from the health care team. oving the patient safely and decreasing
the risk of falls are skills caregivers say are the most difficult. Some of the skills caregivers
may need to learn are(
o !ow to move the patient.
o !ow to help the patient walk.
o !ow to place pillows to make the patient comfortable.
o !ow to give medicines and treatments.
o )hat to do in medical emergencies.
o !ow to solve problems.
o !ow to take care of themselves.
any caregivers also want to know about getting outside help to care for the patient at
home.
How to manage symptoms and side effects
)hen the caregiver is trained in how to help the patient manage side effects of treatment
and symptoms such as pain and fatigue$ the patient is more likely to have the energy and
will to continue with treatment.
"ain is a symptom that is a serious concern for cancer patients and for their caregivers.
ost family caregivers know little about pain and how to manage it. For pain to be controlled
well$ the patient needs to receive the pain medicines as prescribed by the doctor. #
caregiver's knowledge and beliefs about pain medicine may affect the patient's pain relief. #
caregiver who is afraid the patient will become addicted or take an overdose may give the
patient too little pain medicine. )hen the caregiver knows the facts about pain medicines
and the right way to use them$ the patient is more likely to have better pain control. %he
caregiver can talk to a doctor who is e;pert in treating pain and get the information and
emotional help he or she needs to control the patient's pain.
Caregivers may need to learn the following(
o )hat medicines to use and how and when to give them.
o !ow to tell if a medicine is working and common side effects of the
medicine.
o !ow to know when the medicine is causing side effects.
%he health care team also can help caregivers learn ways to manage symptoms without
medicine$ including the following(
o assage.
o !ot or cold compresses *pads placed against the skin+.
o !elping the patient use his or her energy wisely.
o 2est and rela;ation.
o 9istraction *taking the patient's attention away from the symptom+.
See the "9< summary on "ain for more information.
Caregivers may also need information on other common side effects and symptoms$
including(
Fatigue$ drowsiness$ and sleep problems=See the "9< summaries
on Fatigue and Sleep 9isorders.
1ausea$ vomiting$ anore;ia$ and cache;ia =See the "9< summaries on 1ausea
and :omiting and1utrition in Cancer Care.
#n;iety$ mood disorder$ and depression =See the "9< summaries on #djustment
to Cancer( #n;iety and 9istress$ and 9epression.
Coping S%ills
Caregivers can receive support from programs that teach them ways to cope with
caregiving stress. %hese programs give information$ improve caregiving skills$ and help
caregivers feel in control and more hopeful. Some programs train on one topic$ such as
teaching the caregiver how to solve problems or manage patient symptoms$ like pain. >ther
programs train the caregiver in several areas of caregiving$ and these types of programs
may help caregivers feel better overall. %alk to a member of your health care team or call
your local hospital to see if these programs are offered in your area.
>ne program called C>"E *which stands for Creativity$ >ptimism$ "lanning$ and E;pert
information+ trains caregivers in how to solve difficult caregiving problems$ make plans for
their individual situations$ and feel more positive. %his program has been shown to decrease
stress in some caregivers.
%he Family Caregiver Cancer Education "rogram teaches caregivers how to manage
symptoms$ communicate better$ manage roles$ relationships$ and finances$ and take care of
themselves. Caregivers have more confidence and feel they learned useful information after
taking this program. >ver time$ they report feeling healthier.
%raining in specific skills helps improve 'uality of life for many caregivers. "rograms that
offer caregiver training by nurses who visit the home have worked very well. %hese nurses
prepare patients and caregivers for changes in the level of care$ teach them communication
skills$ visit patients at home$ and make sure care continues all through the different phases
of treatment.
Counseling
Counseling helps caregivers deal with the emotions that come with the demands of
caregiving. %he health care team can recommend support groups or refer caregivers
to mental health professionals. %his kind of support may lessen an;iety and depression and
help the caregiver feel more positive$ more able to cope$ and that they have control over the
situation.
"amily &eetings
)hen taking care of a cancer patient$ family members need to work together. %here may be
problems and conflicts in some families$ and the stress of caring for a relative with cancer
can bring up old issues or make new ones. %hese conflicts may cause communication
problems within the family and with the health care team. )hen there are conflicts like this$ it
may help to have family meetings with the health care team.
9uring a family meeting$ the whole family talks with the health care team. Family meetings
help the health care team and the caregivers connect and work together. It is important to
include the family spokesperson and all caregivers. )hile everyone may be trying to do what
they think is best for the patient$ family members may disagree about what this means.
9uring family meetings$ family members can talk about how they feel or decide what kind of
help they can give. Each person may have certain skills to offer. Family meetings may also
help with the following(
Identify caregivers' concerns.
?ive clear information about treatment.
ake it easier to make decisions about treatment choices and about care at the end
of life.
ake sure the caregivers know that symptoms and side effects will be controlled.
ake sure that caregivers know that the wishes of the patient are being considered.
Family meetings are most helpful when(
%here is a clear list of what is going to be discussed.
# member of the health care teams acts as the meeting leader.
Family members and caregivers are given the chance to ask 'uestions and discuss
concerns.
Family members and caregivers are free to talk about painful emotions and receive
the help of trained professionals who care about them.
#t the end of the meeting$ the health care team may go over what was decided and plan the
ne;t steps.
See the "9< summary on Communication in Cancer Care for more information about
communication.
Home Care Help
!ome care services for the cancer patient also give the caregiver support. State or local
health departments usually have a list of licensed home care agencies. Some of the services
that home care agencies provide include the following(
:isits from nurses$ aides$ therapists$ and social workers.
!elp with running errands$ making meals$ and bathing.
9elivery of medicine.
7se of medical e'uipment.
Hospice Care for the Cancer Patient
!ospice care is given to patients who are near the end of life and are no longer being treated
to cureor control their cancer. %he goal of hospice is to help patients live each day to the
fullest by making them comfortable and relieving their symptoms. Family caregivers may
need more training and advice to feel comfortable doing what&s needed to care for the
patient during the final stages of cancer. %he family caregiver often feels as much
emotional distress as the patient does during this time. # hospice care team helps with the
emotional$ social$ and spiritual needs of patients$ caregivers$ and families.