Overview
Who Is a Caregiver?
Finding a "New Normal"
Shifting Your Focus Away from Treatment
Caring for Your Mind and Spirit
Caring for Your Body
Helping with Follow-up Medical Care
Talking with Your Family
Life Planning
Reflection
Caregiver's Bill of Rights
Resources
For more information
Overview
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"You need to find out all that you
can about not only what happens
during treatment, but what to
expect right afterwards--so you
don't get depressed when it
doesn't magically all go away."
- Evan
|
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Each caregiver has a unique response to having had a loved one with
cancer. This booklet was written to share common feelings and reactions
that many caregivers just like you have had after treatment ended. It also
offers some practical tips to help you through this time. 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.
It's important for caregivers to understand that even though treatment
has ended, cancer survivors are still coping with a lot. Often they are
still dealing with side effects from treatment and learning how to adjust
to the many other changes they have gone through. They may not
be returning back to normal life as soon as they, and perhaps you,
had hoped.
As a caregiver, it can help you, friends, and family members to recognize
the issues cancer survivors are facing. For this reason, we encourage you
to read the NCI booklet,
Facing Forward: Life After Cancer Treatment. This
booklet covers issues for the survivor that happen after treatment ends.
Concerns include follow-up medical care, physical and emotional
changes, changes in social relationships, and workplace issues. Reading
the booklet may help you understand the things people face after
treatment, and allow you to better understand their perspectives.
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.
Here are other NCI booklets for caregivers that can be ordered or
printed from the Web. See the inside cover to order.
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Who Is a Caregiver?
"During Dad's treatment,
I slid under. My personality
and everything I wanted and
needed kind of disappeared.
And everything went toward
working with my spouse and
with my children and trying
to make things liveable and
tolerable."
- Dana
This booklet is for you if you are someone who helped your friend or family member get through
cancer treatment. You are that person's "caregiver." You may have helped with day-to-day activities,
doctor visits, and medical decisions. You may have been caring from a distance or traveling to help
with care.
During the course of treatment, you may have had many roles. You may have done a range of
things, from helping to get a second opinion and deciding about treatment, to talking with
visitors, or trying to keep your loved one's spirits up. You may have worked with the medical team,
too, about issues and concerns regarding care.
As treatment ends, patients and caregivers enter a new phase. Until now, you've probably stayed
focused on getting the patient through treatment. You may feel that you haven't had time to think
on your own about things and come to terms with the many changes that have occurred. Did you
put your own feelings and needs on hold until treatment was over? Most caregivers do.
Once treatment ends, most people want to put the cancer experience behind them. Still, many
caregivers aren't sure what to do next. It can be a time of mixed emotions - you may be happy
treatment is over. But at the same time, the full impact of what you've gone through with your
loved one may start to hit you.
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Finding a "New Normal"
"When you're taking
care of somebody,
you're so busy. For me,
staying busy was very
fulfilling. But then,
when it's over, there
can be a vacuum."
--Joanne
The end of cancer treatment is often a time to rejoice.
Most people expect to put their cancer experience behind
them and pick up where they left off in their lives. People
are eager to get back to their normal routines and activities.
Now what do I do? |
One of the most common reactions
by caregivers after treatment ends
is to ask themselves, "Now what do
I do?" They may wonder if they will
be needed as much. And they may
feel a sense of loss. Many have to
think about how to adjust to this
"new normal."
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It's important to remember during this time that each
person involved tends to adjust at his or her own pace.
Some people are able to resume their regular activities
right away. Others may need some extra time to recover.
There may be pressure for you or your loved one to get
back to the way things were before cancer. Yet it's important
to know that for some, this can still be an emotional period.
Your loved one needs time to come to terms with what has
happened. She still may be coping with the effects of
treatment and adjusting to all the changes. She needs to figure out a "new normal." This means
getting back to her old life, but in a way that's probably different than before. This also applies
to you. Taking time for yourself and finding a new sense of normal is a process you will be
adjusting to as well.
During treatment, you took on many roles. You may have
been in charge of many decisions. Your loved one may have
stepped back from decisions to stay focused on getting
through treatment. It's common for caregivers to feel
confused once it's over. You may have questions such as: How
do I help my loved one now? Should I go back to work, or
stay at home? When will he be ready to take on former roles
and responsibilities? The answers to these questions vary with
each person. As you move forward, try to be patient and take
things one day at a time.
Definition of Survivorship |
A person is considered a cancer
survivor from the time of diagnosis,
through the balance of his or her
life. Family members, friends, and
caregivers are also part of the
survivorship experience. The word
"survivor" helps many people think
about embracing their lives beyond
the illness.
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Shifting Your Focus Away from Treatment
The day your loved one finishes treatment is the milestone
you've both been waiting for. It is a time of celebration and
reflection for making it through your experience. You can
begin to start taking back control of your life and thinking
about other things that are important to you.
You may be glad to have free time where you aren't going to
doctor visits, tests, treatment, and running related errands.
Your loved one may start to feel better and you are able to
venture out together to enjoy the things that are part of your
life. Or you may decide to take a vacation or plan a special
event. You may also have time to focus more on things you
may have had to put on hold such as work and family issues.
Even though this is what you've been waiting for, it's
important to recognize that it's a time when you may still
have strong feelings.
The end of treatment
is a time to: |
- Celebrate.
- See what things your loved one
is ready to handle again.
- Focus on other family and work
issues that were put on hold.
- Sort out your feelings on
the experience.
- Spend more time with friends
and family.
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"In some ways, I feel a
loss. For a while I was
pulled in so many different
directions as I took care of
my family and my mother.
But now that she's getting
better, I miss feeling
needed. I don't know
what to do with myself."
- Gloria
It's normal to have many different feelings after treatment ends. Some caregivers say that their
feelings are even more intense after treatment, since they have more time to process it all.
You may feel happy, yet sad at the same time. You may be glad and relieved that your loved one is
through with treatment. But you may also feel anxious because you are no longer doing something
directed at fighting the cancer. You may feel a sense of sadness and loss at still seeing your friend or
family member in a weakened state. This can also be a
time when you feel more lonely and isolated than before.
For example:
- You may miss the support you had from the
patient's health care team.
- You may feel as if a
safety net has been taken away.
- You may feel pressure to return to your old self.
- Friends and family may go back to their daily lives,
leaving you with more to do. They may not be
checking in with you as they did when your loved
one was getting treatment.
- You may still avoid going out with others for fear of
something happening to your loved one while you
are gone.
- You may find it hard to relate to people who
haven't been through what you have.
You may have many feelings as you see your loved one
struggle with moodiness, depression, or loss of selfesteem.
Some people worry that any physical problem is
a sign of the cancer returning. Yet at the same time, you
may feel thankful that this person is here and part of
your life. You may look forward to putting more energy
into the things that mean the most to you.
These feelings are all normal. It helps to give yourself
time to reflect on your experience with cancer. People
need different amounts of time to work through the
challenges that they are facing.
It's okay to cry or express your feelings as you cope with
the changes that come after treatment ends. You don't
have to be upbeat all the time or pretend to be
cheerful. Give yourself time to cope with what you and
your loved one have gone through. Many caregivers say
that the strong feelings they had right after treatment
ends often lessen with time.
If feelings of sadness or despair last for more than a few
weeks, this can be a sign of depression. Some signs of
depression can also be symptoms of other physical
problems. You may want to talk with your doctor if
these feelings make it hard for you to function.
Depression can be helped by talking with a counselor
or therapist or with medicine. See the list to the right
for warning signs of depression.
Do you need help with
depression or anxiety? |
Remember, many of the things
listed below are normal. This is
especially true when you are
dealing with a lot of stress. But talk
with your doctor if you have any of
these signs for more than 2 weeks.
Your doctor may suggest treatment.
Signs of Depression or Anxiety
- Feeling helpless or hopeless, or
that life has no meaning
- Not feeling interested in family,
friends, hobbies, or things you
used to enjoy
- Loss of appetite
- Feeling short-tempered
and grouchy
- Not being able to get certain
thoughts out of your mind
- Crying for long periods of time
or many times each day
- Thinking about hurting or killing
yourself
- Feeling "wired," having racing
thoughts or panic attacks
- Having sleep problems, such as
not being able to sleep, having
nightmares, or sleeping
too much
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Caring for Your Mind and Spirit
Many caregivers find that cancer causes them to look at life in new ways. They may reflect on
spirituality, the purpose of life, and what they value most. It is common to view the cancer
experience both negatively and positively at the same time. After treatment, you and your loved
one may struggle to understand why cancer has entered your lives. You may wonder why you have
had to endure such a trial in your life.
The way cancer affects one's faith or religion is different for everyone. Some people turn away from
their religion, while others turn toward it. It is common to question one's faith after cancer. But for
others, seeking answers and searching for personal meaning helps them cope.
Many caregivers have found that their faith, religion, or sense of spirituality is a source of strength
as they face life after cancer treatment. Many say that they have been able to find meaning in their
lives and make sense of their cancer experience through their faith. Faith or religion can also be a
way for caregivers and their loved ones to connect to others in their community who may share
similar experiences or outlooks, or who can provide support. Studies have also shown that for
some, religion can be an important part of both coping with and recovering from cancer.
Here are ways you may find comfort and meaning through your faith or religion:
- Reading materials that are uplifting to help you feel connected to a higher power
- Praying or meditating to help you feel less fearful or anxious
- Talking about your concerns or fears with a leader of your faith community
- Going to religious or spiritual gatherings to meet new people
- Talking to others at your place of worship who have had similar experiences
- Finding resources at a place of worship for people dealing with chronic illnesses like cancer
If you've been putting your own needs aside, this may be a good time to think about how you can
best care for yourself. Having some down time to recharge your mind and spirit can help you cope.
You may want to think about:
- Getting back to activities that you enjoy
- Finding ways others can help you
- Finding new ways to connect with friends
You may feel tempted to tell people that you and your
loved one are doing fine and don't need help. It may be
that you don't want to trouble people any longer.
Chances are that both of you are tired and are still
getting used to life after treatment. It may help to tell
others that you're still adjusting and let them know ways
they can help. Try to keep a support system made up of
people such as:
- Family and friends
- Members of your faith community
- Neighbors
- Coworkers
- Members of civic groups and associations
Think about what type of support would be helpful. Do
you need help from someone to do tasks? Or do you just
need someone to be there to listen while you talk? The
clearer you can be about your needs, the easier it is for
people to help you.
Small Things
I Can Do for Me |
Each day, try to take some time to
do something for you, no matter
how small it is. Some ideas include:
- Napping
- Exercising or doing yoga
- Keeping up with a hobby
- Taking a drive
- Seeing a movie
- Working in the yard
- Going shopping
- Catching up on phone calls,
letters, or e-mail
You may find that it's hard to relax,
even when you have time for it.
Some caregivers find it helpful
to do exercises such as deep
breathing or meditation.
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Family, friends, neighbors, and coworkers who stayed
away during treatment may now be willing or able to
provide you with support. You may find it helpful to talk
with someone who did not go through the cancer
experience with you. This could be a family member,
friend, faith or spiritual leader, counselor, or support
group member.
It's important to find ways to cope with your thoughts
and feelings. Would talking with others help? If so, it's
important for you to connect with other people,
especially if you want to say things that you can't say to
your loved one. Try to find someone you can really open
up to about your feelings or fears.
However, you may also need to be aware that others may
not be there to help. They may feel awkward about
helping or assume that you're getting back to "normal"
and don't need help any more. Or they may have
personal reasons, such as lack of time or things going on
in their own lives.
"What I need at least
once or twice a week is
to talk to someone or a
group of people who are
in the same shoes as
I am."
- Vince
Support groups can meet in person, by phone, or over the Internet. They can 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.
If you feel like you would enjoy 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. (See the
Resources section to find out how to contact
these groups.)
You may have used or looked into respite ("res-pit") care already. Even though your loved one has
completed cancer treatment, there may still be many caregiving tasks. Respite helpers spend time
with your loved one so you can rest, see friends, run errands, or do whatever you'd like to do. They
can be paid or volunteer. Respite services can also help with the physical demands of caregiving,
like lifting your loved one into a bed or a chair. If this service would be useful for you to start or
keep, you may want to:
- Talk with the patient about having someone come into your home to help out from time
to time. If you already have respite care helpers, talk about keeping them for a while.
- Ask the respite helpers what types of tasks they can do, now that treatment has ended.
- Get referrals from friends or health care professionals. Your local agency on aging should
also have suggestions.
Respite help can come from many sources:
- Family, friends, or neighbors
- Coworkers
- Members of your faith community
- Government agencies
- Nonprofit groups
Whatever you do, remember that it isn't a failure on your part as a caregiver if you need help. |
You may be feeling overwhelmed and feel like talking to someone outside your inner circle of
support. Some caregivers find it helpful to talk to a counselor, psychologist or other mental health
professional. Others also find it helpful to turn to a leader in their faith or spiritual community.
All may be able to help you talk about things that you don't feel that you can talk about with your
loved one or others around you. You also might find ways of expressing your feelings and learn
ways of coping that you hadn't thought of before.
After treatment ends, many caregivers feel the need to give back to others who are facing cancer.
They turn their energy to helping people in their community, joining support groups, or
volunteering with cancer organizations. For many, making a difference in the lives of others also
helps them to help themselves. For more information on ways that you can make a difference in
the lives of people with cancer, see the inside cover to find out how to request NCI's brochure,
Facing Forward: Ways You Can Make A Difference in Cancer.
Many caregivers find that writing in a journal helps them decrease negative thoughts and feelings.
Expressing things on paper may help you process what you are going through. You can write about
any topic, such as your most stressful experiences or something that is bothering you. You can also
write about the things that lift you up and bring you joy, such as a kind neighbor, a stress-free day,
or time spent with others.
Caregivers say that looking for the good things in life helps them feel better. They also try to focus
on the things they can control, rather than the things they can't. Each day, try to think about
something that you found rewarding about
caregiving. Or take a moment to feel good
about anything positive about the day - a nice
sunset, a hug, a good meal, or something
funny you heard or read.
It's okay to laugh. In fact, it's healthy. Laughter
releases tension and makes you feel better. You
can read humor columns, watch comedy shows,
talk with amusing friends, or remember funny
things that have happened to you. Keeping
your sense of humor in trying situations is a
good coping skill.
Worrying About Your
Risk of Cancer |
"Before my mom was
diagnosed with breast cancer,
I didn't think much about
my own health. But now
I'm worried because my
grandmother had breast
cancer, too. It's not only me,
but also my 10-year-old
daughter I'm worried about.
Shouldn't we both get
checked?"
- Jeanne
A blood relative's cancer diagnosis
may make you more concerned
about whether you will get cancer,
too. Most cancer is not passed
down through families. Only about
5 to 10 percent of the most common
cancers - breast, colon, and
prostate cancer - are inherited.
This is an important topic to
discuss with your doctor.
Your doctor will want to know what
types of cancer have been in your
family and which family members
had it. The more relatives you have
had with certain types of cancer,
the higher your risk. Talk to your
doctor about prevention
and screening.
If you have a strong family
history of cancer, you may
want to talk to your doctor
about whether genetic
testing is right for you. Some
people like to know this, so
they can get tests or cancer
screenings more often.
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Caring for Your Body
Like many caregivers, you are probably very tired. Perhaps you were so busy and concerned with
your loved one that you couldn't pay much attention to your own health. But it's very important
that you take care of your health, too.
Added stress and daily demands can cause new health problems for caregivers, on top of any
problems that they already have. Some examples are:
- Fatigue
- Sleep problems
- Poor ability to fight off illness (weakened immune system)
- Slower healing of wounds
- Higher blood pressure
- Changes in appetite or weight
- Headaches
- Anxiety, depression, or other mood changes
Be sure to make time for your own checkups, screenings, and other medical needs. Talk with
your doctor about any symptoms you have. Experienced caregivers also suggest focusing on the
basics, and:
- Taking your medicines as prescribed. Ask your doctor to give you extra refills to save trips.
Find out if your grocery store or pharmacy delivers.
- Trying to eat healthy meals. Eating well will help keep up your strength.
- Getting 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. Talk with your
doctor if lack of sleep becomes an ongoing problem.
- Exercising. 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.
- Making 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. It's important
to tend to your needs and reduce your own stress levels.
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Helping with Follow-up Medical Care
Many caregivers are surprised to find that their loved one's recovery takes longer than they
thought it would. For some people, recovery can be an ongoing process, involving physical and
emotional changes. A lot of emotional support, love, and patience from you and other family
members may be needed.
After treatment ends, you may begin to worry about whether the cancer will come back. This is
one of the most common fears people have, especially during the first year after treatment. As
time goes by, fear of cancer returning may lessen for you, and you may find that you aren't
thinking about it as much. Yet even years after treatment, you may find that certain occasions, such
as follow-up visits, anniversary of the cancer diagnosis, or even symptoms that may seem similar to
when your loved one had cancer, may trigger concern and worry.
This is the time to begin shifting your focus from cancer treatment to follow-up tests and care.
During follow-up care, the patient continues to see the doctors and specialists he saw during cancer
treatment. They might recommend certain tests to monitor his health. They will also want to manage
side effects from treatment and look for new ones that appear later. You may need to help keep track
of information and help with your loved one's choices for care. Being active partners in decisionmaking
can help both you and your loved one regain a sense of control that may have been lost
during treatment.
At the first follow-up visit, the doctor will suggest a follow-up schedule. In general, people who
have been treated for cancer return to the doctor every 3 to 4 months during the first 2 to 3 years
after treatment. They then go once or twice a year after that for follow-up visits.
"Every time I go with her
to a checkup, I think,
'What is it going to be
this time?' Every ache
and every pain becomes a
gigantic question mark. It's
been two years now, and
still whenever something
comes up, you just have to
look at each other and say,
'One step at a time.'"
- Bill
If your loved one wants you to continue to go with her to
doctor visits, ask how you might be helpful. You may want
to talk to your loved one about any changes you're seeing
in her, no matter how small. These may be:
- Fatigue
- Pain
- Lymphedema (swelling)
- Mouth or teeth problems
- Weight changes
- Bowel and bladder control
- Menopause symptoms
- Sexual problems
For more information about these side effects,
see Side Effects to Watch for After Treatment.
If you need to learn more, or do not understand, be
sure to ask the doctor to explain. It's normal to have
questions. Other caregivers have found it helpful to:
- Talk about ways to follow a healthy diet and
lifestyle, if this will be something new. You may
even want to talk with the doctor about developing
a wellness plan for your loved one and family.
- Ensure that the patient asks for copies of any new
tests or medical records at the time of the visit.
Keep these in a folder or notebook, along with a
list of medicines she is taking, in case you need
them later. In it, include a list of important names
and numbers you may need. This may be
members of the healthcare team, pharmacists,
and insurance contacts.
- Help keep track of your loved one's medication
schedule and prescriptions to be filled.
- Talk about whether counseling would be helpful.
A counselor could help you and your loved one
cope with what has happened.
- Encourage your loved one to keep a "health
journal." This can help keep track of any symptoms
or side effects that occur between checkups.
Tips on Coping with Fear of
Cancer Returning |
|
It may take time for the patient to get over the side effects from treatment.
All people recover differently, based on the type of treatment they had and their
overall health. If your loved one seems frustrated, upset, or angry, it may help to
understand that she may still be coping with some of the same problems that she
had during treatment. Some of the most common side effects people report are:
- Fatigue: Feeling tired or worn out after treatment is one of the most
common side effects the first year after treatment. Rest or sleep does not
"cure" this type of fatigue. For some, fatigue gets better with time, and for
others it may last years.
- Pain: Your loved one's skin may feel sensitive where she received radiation,
or she may have pain or numbness in the hands and feet due to damaged
nerves, or she may have pain in a missing limb or breast.
- Memory Problems: Memory and concentration problems can begin during
and after treatment. They do not always go away. If a person is older, it may
be hard to tell if the problems are age-related or not. Either way, some
people feel that they cannot focus as they once did.
- Lymphedema (LIMF-eh-DEE-ma): The patient may have swelling caused by
a build-up of fluid in the tissues. It can be quite painful. Some types don't
last very long, and other types can occur months or years after treatment.
Lymphedema can also develop after an insect bite, minor injury, or burn.
- Mouth or Teeth Problems: These problems include dry mouth, cavities,
changes in taste, painful mouth and gums, infections, and jaw stiffness or
jawbone changes. Some people also have trouble swallowing. Some of these
problems may go away after treatment. Others last a long time, or never go
away. Some may develop months or years after treatment.
- Weight Changes: Some people have problems with weight loss because they
have no desire to eat. Others have problems with weight gain. Unfortunately,
the usual ways people try to lose weight may not work for them.
- Bowel and Bladder Control: Some treatments or surgery may cause
problems with bowel and bladder control. This may be a total loss of control
for some, while others have some control, but have to make lots of sudden
trips to the bathroom. These problems are very upsetting for people. People
often feel ashamed or afraid to go out in public.
- Menopause Symptoms: Some women stop getting their periods every
month, or stop getting them altogether. For some younger women, their
periods may start again, but for others they may not. Common signs are
changes in periods, hot flashes, problems with the vagina or bladder, lack of
interest in sex, and fatigue and sleep problems. Memory problems, mood
swings, depression, and feeling irritable may also occur.
- Sexual Problems: Sexual problems in the body can be caused by changes
from cancer treatment or the effects of pain medicine. Sometimes these
problems are caused by depression, guilt, changes in body image, and stress.
Some patients lose interest in sex because they struggle with their body image,
or because they are tired or in pain. Others are not able to have sex as they
did before because of changes in sex organs. Other main concerns people
have are symptoms of menopause, and not being able to have children.
These are all common side effects you may want to watch for in your loved one.
If he is struggling with any of these, you may want to suggest talking to the doctor
about ways to get relief. For information on these changes, see the NCI publication,
Facing Forward: Life After Cancer Treatment. It can be downloaded from the Web at
www.cancer.gov, or ordered by calling NCI's Cancer Information Service toll-free
at 1-800-4-CANCER.
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After treatment ends, you may not be sure what kind of help is still needed. You may feel
like you're a step behind in knowing how your loved one is coping. Yet even if you live far
away, you can still give support. You can still
be a problem-solver while starting to get
back to your own routine.
Caregivers who live more than an hour
away often rely on the telephone as their
link. But it's hard to track someone's needs
by phone. You know that you would rush to
their side for a true medical emergency.
Other situations, however, are harder to
judge. Staying in regular contact by phone
or e-mail is important to help lift your loved
one's spirits, as well as your own. Talking
with her may also give you a sense of how
she's coping.
Many caregivers say that it helps to explore paid and volunteer support for your loved one
if he still needs help. If you have not done so already, try to create a support network of
people who live nearby. These should be people who you can call day or night and count
on in times of crisis. You may also want them to just check in with your loved one from
time to time. People who could not help during treatment might be able to now.
You could also look into volunteer visitors, adult day care 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.
- Discuss what kind of support is still needed.
- If other family members or friends are visiting, check in with them to get their
thoughts on how your loved one is coping.
- Ask other long-distance friends and family to stay in touch with your loved one by
phone calls, cards, or e-mail.
- If you're feeling out of the loop now that you're far away again, remind your friends
and family that you still need support, too.
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Talking with Your Family
How families communicate with each other changes throughout the cancer experience. There
may have been times when you and your loved one were communicating well with each other. At
other times you may have found it hard to share your feelings, worries, and hopes.
Many caregivers say that going through treatment together made their family closer. Some worry
that once treatment ends, things may feel different and that communication might be harder. For
some families who were having trouble talking before the cancer, the problems may seem more
intense now. Roles may change, which can trigger different emotions. It can affect families in ways
they never expected. For example:
- Adult children may have trouble accepting that recovery may take more time than expected.
- Adult children who have been taking care of a parent may have a hard time letting her
make her own decisions again.
- Parents of adult children with cancer may still feel a need to protect their chilren and
stay involved.
It's easy to say that good communication is even more important now that treatment is over. But it
can be hard to know how you, family members, and your loved one can keep growing together
after treatment. Try to remember that this period of time is new for all. It will take some time to
sort things out.
After your partner's treatment, here are a few things to consider:
- Give yourselves time. Many problems that you and your loved one have now may get better
over time, as each of you adjusts.
- Your partner may need extra
emotional support to cope
with physical changes or
with feeling less adequate as
a parent, partner, or friend.
- If either of you are feeling
constantly anxious or sad,
it can be a strain on both
of you.
- Keep in mind that if your
partner is acting angry or
frustrated with you, it could
be that he is still trying to
adjust to recovery.
- Couples who have honest and caring communication often find that their relationship
becomes stronger after cancer.
- Ask your loved one how she is doing now that treatment has ended. The answer may help
you both.
"We're inseparable now, on a
certain level. We were pretty
tight before, but now there's a
level of trust and dependency
that goes both ways that's
hard to describe. All the little
things that we bickered about
are gone, now that we've
faced death together."
- Jim
You may find that sex with your partner is different
than it used to be. This can be caused by feeling tired
or being afraid of hurting him. Treatment may also
have affected your partner's interest in sex or ability
to perform. You can still have an intimate relationship
with him in spite of these issues. Intimacy isn't just a
physical connection. It also involves feelings. Here are
some ways to improve your intimate relationship:
- Talk about it. Choose a time when you and
your partner can talk and concentrate only on
talking. Talk about how you both can renew
your connection.
- Try not to judge. If your partner isn't
performing, try not to read meaning into it.
Let him talk about what he needs right now.
Or give time and encouragement to talk when he is ready.
- Make space. Protect your time together. Turn off the phone and television and, if needed,
find someone to take care of the kids for a few hours.
- Go slowly. Plan an hour or so to focus on each other without being physical. For example,
you may want to listen to music or take a walk. This time is about reconnecting.
- Try a new touch. Cancer treatment or surgery can change your partner's body. Places
where touch once felt good may now be numb or painful. While some of these changes will
go away, some may not. For now, you can figure out together what kinds of touch feel
good. If you find it hard to get back to your sexual relationship, talk to a specialist about
your sex life after cancer.
Give your loved one time to
store up the extra energy
needed to nurture children.
There may be times when she
feels guilty for being too tired
to play with the children. Rest
and emotional support will
help these feelings go away
over time.
What you decide to tell your
children after treatment
depends on what you have told
them so far. Try to be honest
about any aspects of the
patient's health that affect
them. Tell them what to
expect over the next few weeks
and months. Be positive and
hopeful. Also be prepared to
repeat yourself over the next
few months and years. Your
children will hear only what
they are ready to hear. As they
mature, even week to week,
they will become ready to take
in more.
Protect your children from the anxiety of waiting for test results and from the ups and downs of
judging potential problems. Only tell them when you know something definite that may change
things at home. Try to avoid telling them about problems that they can't help with, such as medical
bills. If your bills force you to make drastic changes to your lifestyle, then present this as a fact of
life. Adjusting to changing finances teaches your children about facing challenges and loss.
You don't have to tell children about every checkup or every symptom that occurs. But do tell your
children if there are long-term side effects that make certain daily activities hard for your loved
one. If he is not able to do an activity or go to an event, the children may think that he is unhappy
or mad at them.*
If you're not sure how your children are feeling, talk with them. And more importantly, listen to
them. You may also want to check with teachers, coaches, and other adults in their lives to find out
if they notice any changes or concerns.
* Harpham, W. 1997. When A Parent Has Cancer: A Guide to Caring For Your Children. New York, NY; HarperCollins Publishers Inc.
Adapted with permission.
"Ever since my husband has
been sick, my kids are scared
to go near him. They don't
know how to react. For them,
it's a big change, because
they've always been close to
their father, and now it's like
he doesn't have the energy to
go to the ballgames and do
stuff with them."
- Harriett
One of the best things to do during this time is to keep
telling and showing your children that you love them no
matter what. Here are a few things you might say:
- "We'll still be here to take care of you."
- "Even though treatment is over, it will take time
for (Mom, Dad, Grandpa, etc.) to feel better. He
may not have the same energy as before. But
even though he may not be able to do all the
things he used to do, he still loves and cares
about you. And he wants to come up with new
ways to spend time together."
- "(Mom, Dad, Grandma) will keep going to
doctor's appointments to make sure that we're
doing all we can to keep her healthy."
- "If you have aches or pains, it doesn't mean that
you have cancer. But it's good to let us know how
you're feeling so that we can take care of you."
- "What you do doesn't change the cancer in any way. We're okay with you just being yourself.
You don't need to be perfect all the time. We'll love you no matter what."
- "You can ask or tell us anything, and we won't be upset. We'll be glad that you told us."
(Good communication with your children can help them counteract wrong information
they may hear.)
- "It's okay to have a lot of different feelings--mad, sad, happy, afraid, worried, and thankful.
It doesn't always feel good to have certain feelings. But it does help to talk with us about
how you're feeling."
- Thank your children for all they did during treatment. Many children take on a lot of adult
tasks during treatment, such as chores or helping with younger siblings. Let them know if
you and others are now able to take on some of these roles again, so they don't have to.
Assure them that it's okay to be a kid again. And if they are angry about all that they've been
doing, try to understand where they're
coming from. Listen to them, and let
them tell you how they feel.
- If one of your children felt bossed
around by a sibling that was in charge
during treatment, tell your child to
express his feelings at you, the parent,
rather than at his brothers and sisters.
Let him know that you care about his
feelings. Make it clear that you are back
in charge.
- Tell your children that even though the cancer survivor may look or act differently, she is
still the same loving, caring person inside. Invite the children to ask questions and share
their feelings. Spending time together as a family and making sure that your children spend
time with your loved one can help.
- Try to spend extra time with your kids. Plan some fun things and special activities with them.
You can also help them re-engage in social or school activities they may have been missing.
- Teens may have mood swings or start acting out now. Some may feel embarrassed that their
family is different because of cancer, and may act distant or angry. Others assume life will go
back to the way it used to be, acting as if nothing has happened. And teens who plan to leave
home after high school may feel torn about leaving now. Whatever the case may be, try to
remember that they, too, have coped with a loved one's cancer, as well as the other issues that
take place at this age. If possible, try to stay involved and communicate as best as you can
with them.
Your loved one's cancer may have triggered feelings
and changes in your family that you never expected.
Some family members may have been very helpful
and supportive, which strengthened your
relationship. Others may have had conflicts and hurt
feelings during treatment, which may take time to
heal. Likewise, some people may choose to stay
involved and continue to offer love and support.
Others may not be as involved as they once were.
And some people may have unrealistic expectations
for your loved one's recovery time. Like your
children, they may assume life will return to normal
more quickly than possible. Here are some things
you can do to help improve communication with
other family members:
- Talk about issues with them. Be honest about what is needed now that treatment is over.
- Ask the doctor or other member of the health care team to talk with them. Have her
explain what to expect in the coming months.
- Ask a counselor or social worker to lead a family meeting. Family members can then
express their concerns in front of a third party.
- If your family doesn't communicate well, ask a social worker for printed information or
Web sites to help explain the situation. You can give this information to your relatives.
- For other relatives who continue to want to help, be specific about the situation. Let them
know how your loved one is doing and what types of help are needed.
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Life Planning
"I'm not working for the
money. I'm working for
the benefits. If we don't
have benefits, we'd lose
everything."
- Debbie
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
costs are covered.
For information about resources that are available, see
the Resources section. You can also get the
NCI fact sheet, "Financial Assistance for Cancer Care,"
at
www.cancer.gov, search terms "financial assistance."
Or call toll-free 1-800-4-CANCER (1-800-422-6237)
to ask for it.
One of the greatest sources of strain is trying to balance work demands with providing care and
support to a loved one. Some caregivers feel relieved to go back to work. However, for others it
can be hard because you may not feel as if you're back to normal. You may feel exhausted and
find it hard to focus on work after the intense caregiving experience. Or you may not want to start
back up full-time if you're still
caring for the person with
cancer. People at work may
expect you to be back to normal
now that treatment is over. How
caregiving can affect your work
life includes:
- Mood swings that leave
coworkers confused or
nervous about working
with you
- Trouble focusing or
getting your work done
- Being late or calling in
sick because of stress
It's a good idea to find out your company's
rules and policies. 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 paid sick leave to take care
of your loved one, or they may let you take
unpaid leave.
If your employer doesn't have any policies in
place, you could try to arrange something
informally. Examples include flex-time,
shift-exchanging, adjusting your schedule, or
telecommuting. Also, the Family and Medical
Leave Act may apply to your situation.
Visit
http://www.dol.gov/esa/whd/fmla
for more information.
For sources of support, see the Resources section.
Now that your loved one has gone through
treatment, he may see the value of having an
advance directive if he didn't before.
Advance directives are legal documents that
let a person decide important issues ahead
of time, including how much treatment to
receive and who should make decisions if he
or she can't. Having an advance directive
helps ensure that your loved one gets the
treatment he wants. Understanding his
wishes will also make it easier for you if a
time comes when you need to make
treatment decisions.
Legal Papers At-A-Glance |
Advance directives include:
- 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 if he
or she can't make them. This person,
chosen by the patient, is called a
health care proxy.
Other legal papers that are not part of
the advance directives include:
- A will tells how a person wants to
divide money and property among his
or her heirs. (Heirs are usually the
surviving family members. Other
people may also be named as heirs
in a will.)
- A trust appoints the person a patient
chooses to manage money for her.
- Power of attorney appoints a person
to make financial decisions for the
patient when he can't make them.
Note: A lawyer does not always need to
be present when you fill out these papers.
However, a notary public may be needed.
Each state has its own laws about
advance directives. Check with your
lawyer or social worker about the laws
in your state. (For more, see the
Resources section.)
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Reflection
"If you find it in your heart
to care for somebody else,
you will have succeeded."
- Maya Angelou
The end of treatment often comes as a time to look forward to the future. New rituals and new
beginnings can bring a sense of relief and joy to caregivers and their loved ones. It can also be a
time of physical and emotional change. This is true not only for your loved one, but also for you as
a caregiver. During treatment, your focus was on the patient's needs. Now that treatment is over,
try to take time to get back in tune with yourself. Allow healing time for you, your loved one, and
your family. Try to plan what you and your loved one can do to begin living without cancer as a
main focus.
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 their friends or family members
describe the experience as a personal journey. This is much like the way people with cancer
describe their experience. It's not necessarily a journey they would have chosen for themselves.
But they can use their skills, strength, and talents to support their loved ones while finding out
more about themselves along the way.
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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)
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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 |
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.
American Cancer Society
National Cancer Information Center
Provides a variety of cancer information and support to patients, families, and caregivers. Also supports research, community education, and advocacy and public policy issues.
CancerCare
Offers free support, information, financial assistance, and
practical help to people with cancer and their loved ones.
Cancer Hope Network
Cancer Hope Network matches patients and families with trained volunteers who have recovered
from a similar cancer experience.
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.
Lance Armstrong Foundation
The Lance Armstrong Foundation seeks to inspire and empower people living with, through, and
beyond cancer to live strong. It provides education, advocacy, public health and research programs.
Phone: | 1-512-236-8820 (general number)2
1-866-235-7205 (LIVESTRONG SurvivorCare Program)
|
Web Site: | www.livestrong.org |
National Coalition for Cancer Survivorship
NCCS provides information and resources on cancer support, advocacy, and quality-of-life issues to cancer survivors and their loved ones.
National Family Caregivers Association (NFCA)
NFCA provides information, education, support, public awareness, and advocacy for caregivers.
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.
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
The Wellness Community is a national organization that provides support groups, stress reduction and cancer education workshops, nutrition guidance, exercise sessions, and social events.
Back to Top
For more information
The following free booklets may be helpful if your
loved one has completed cancer treatment:
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. |
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