Adjusting to Being a Caregiver
Thinking About Your Strengths and Limits
Why Getting Help Is Important
Long-Distance Caring
"Once a week, after I take
the kids to school, I then
take Mom to her doctor's
appointment. Then I take
her home and make her
lunch and sit with her
awhile. She argues with
me every time because
she wants to do it herself.
It's hard for her to have
to rely on me."
- Lynn
Whether you're younger or older, you may find yourself in a new role as a caregiver. You may have
been an active part of someone's life before cancer, but perhaps now the way you support that
person is different. It may be in a way in which you haven't had much experience, or in a way that
feels more intense than before. Even though caregiving may feel new to you now, many say that
they learn more as they go through their loved one's cancer experience. Common situations that
many caregivers describe:
- Your spouse or partner may feel comfortable with
only you taking care of him.
- Your parent may have a hard time accepting help
from you (their adult child) since she's always
been used to caring for you.
- Your adult child with cancer may not want to rely
on his parents for care.
- You may have health problems yourself, making
it hard physically and emotionally to take care of
someone else.
Whatever your roles are now, accepting the changes may
be tough. It's very common to feel confused and stressed
at this time. If you can, try to share your feelings with
others or a support group. Or you may choose to seek
help from a counselor or psychologist. Many caregivers
say that talking with a counselor helped them. They feel
they were able to say things that they weren't able to say
to their loved ones. See
"Talking with Family and Friends"
for more tips.
"It's emotionally exhausting,
and I never know what to
expect. One minute, things
are looking up. Then a couple
of hours later, something
happens and I don't have
the answers."
- David
You've probably felt a range of feelings as you care for your loved one. These feelings can be quite
strong and will likely come and go in strength as you go through treatment with the patient. Many
caregivers describe this as "like a rollercoaster." You may feel sad, afraid, angry, and worried. There
is no right or wrong way to feel or react to these feelings.
You may relate to all of the feelings below, or just a few. You may feel them at different
times, with some days being better than others. It may help to know that other caregivers have
felt the same way that you do. One of the first steps to coping with feelings is to recognize that
they exist and that having them is normal. Try to give yourself time to understand and work
through your range of emotions.
Anger. Caregivers say that it's common to be angry with
themselves, their family members, or the patient.
Sometimes anger comes from feelings that are hard to
show, such as fear, panic, or worry. If you can, try to avoid
lashing out at others because of these emotions. Anger can
be healthy if you handle it the right way. It can help
motivate you to take action, find out more, or make
positive changes in your life. But if these feelings persist
and you remain angry at those around you, talk with a
counselor or other mental health professional.
Grief. You may be mourning the loss of what you hold most
dear--your loved one's health or the life you had with each
other before cancer. It's important to give yourself
permission to grieve these losses. It takes time to work
through and accept all the changes that are occurring.
Guilt. Feeling guilty is a common reaction for caregivers. You may worry that you aren't helping
enough, or that your work or distance from your loved one is getting in the way. You may even feel
guilty that you are healthy. Or you may feel guilty for not acting upbeat or cheerful. But know that
it's okay. You have reasons to feel upset and hiding them may keep other people from
understanding your needs.
Anxiety and depression. Anxiety means you have extra worry, you can't relax, you feel tense, or you
have panic attacks. Many people worry about how to pay bills, how things will affect the family, and
of course, how their loved one is coping. Depression is a persistent sadness that lasts more than
two weeks. If any of these symptoms start affecting your ability to function normally, talk with your
health care provider. Don't think that you need to tough it out without any help. It's likely that
your symptoms can be eased during this hard time.
"There is a helplessness that
you feel. There are times
when you don't know how
to help. You can't take away
the pain. You can't take
away the frustration. All
you can do is be there, and
it's a very helpless feeling."
- Cecile
Hope or hopelessness. You may feel hope or hopelessness
to different degrees throughout your loved one's cancer
treatment. And what you hope for may change over time.
You may hope for a cure most of all. But you may also hope
for other things, such as comfort, peace, acceptance, and
joy. If you're not able to get rid of a feeling of hopelessness,
talk to a trusted family member, friend, health provider, or
spiritual or faith leader.
Loneliness. You can feel alone in your role as a caregiver,
even if you have lots of people around you. You may feel
that no one understands what you're going through. You
may feel lonely because you have less time to see people
and do things that you used to. Whatever your situation,
you aren't alone. Other caregivers share your feelings.
See "Connect with Your Loved One" for ways to connect with others.
Let go of mistakes. You can't be perfect. No
one is. The best we can do is to learn from
our mistakes and move on. Continue to do
the best you can. And try not to expect too
much from yourself.
Cry or express your feelings. You don't have
to be upbeat all the time or pretend to be
cheerful. Give yourself time to cope with all
the changes you are going through. It's okay
to cry and show that you are sad or upset.
Put your energy into the things that matter to you. Focus on the things you feel are worth your
time and energy. Let the other things go for now. For example, don't fold the clothes when you're
tired. Go ahead and take time to rest.
Understand anger. Your loved one may get angry with you. It's very common for people to direct
their feelings at those who are closest. Try not to take it personally. Sometimes patients don't
realize the effect their anger has on others. So it may help to share your feelings with them when
they are calm. Try to remember that the anger isn't really about you.
Forgive yourself. This is one of the most important things you can do. Chances are that you are
doing what you can at this moment. Each new moment and day gives you a new chance to try again.
"Growing up, we were
taught two rules. One is,
'Don't sweat the small
stuff.' And second,
'Everything is small stuff.'
And you have to decide
what's important to you.
Focus on what you can do,
not what you can't."
- Anne
One way that caregivers cope is to focus their energy on things they can control. This can mean:
- Helping schedule doctor visits
- Helping with day-to-day needs such as meals
- Taking on your loved one's tasks
- Learning more about cancer and treatment options
- Doing whatever else you can do
Many caregivers say that, looking back, they took on too
much themselves. Or they wish they had asked for help
with tasks sooner. Take an honest look at what you can and
can't do. What things are you good at or need to do
yourself? What tasks can you give to or share with others?
Be willing to let go of things that aren't essential for
you to do.
Make a list of your weekly tasks and activities. Figure out
how much time you spend on each one and how
important it is. Scratch things off your to-do list if they
aren't important. That will give you more time for the
things you really want and need to do. This may mean
disappointing someone else. But you need to take care of
what's important to you, regardless of what others may
think. Most people will understand if you tell them what
is going on.
"You have to learn that if
people offer, let them do
something. Ask for what you
need to have done, because
they don't know. You have
to be willing to let go of
your pride and let them
help you."
- Chevonne
Accepting help from other people isn't always easy. When
tough things happen, many people tend to pull away.
They think, "We can handle this on our own." But things can get harder as the patient goes
through treatment. You may need to change your schedule and take on new tasks. Many caregivers
have said, "There's just too much on my plate."
Remember that getting help for yourself can also help your loved one because:
- You may stay healthier.
- Your loved one may feel less guilty about all the things that you're doing.
- Some of your helpers may offer time and skills that you don't have.
Would you find it helpful if someone made dinner for you or ran some of your errands? If so, you
may benefit from having people help with tasks you don't have time to do. Your support system
could include only one person or many people. And their support could take many forms.
People want to help, but many don't know what you need or how to offer it. It's okay for you to
take the first step. Ask for what you need and for those
things that would be most helpful to you. For example,
you may want someone to:
- Help with household chores, including cooking,
cleaning, shopping, yard work, and childcare
or eldercare.
- Talk with you and listen to your feelings.
- Drive your loved one to appointments.
- Pick up a child from school or activities.
- Look up information that you need.
- Be the contact person and help keep others
updated on your loved one's situation.
Think about people who can help you with tasks. Think of all the people and groups you know,
including family, friends, neighbors, and coworkers. Members of your faith community, civic
groups, and associations may also be able to help.
Respite (RES-pit) helpers spend time with your loved one. They can be paid or volunteer their time.
Many caregivers say they wish they had gotten respite help sooner. It can leave you free to rest, see
friends, run errands, or do whatever you'd like to do. Respite caregivers can also help with physical
demands, such as lifting the patient into a bed or a chair. If this service appeals to you, you may want to:
- Talk with your loved one about having someone
come into your home to help out from time to time.
- Get referrals from friends, health care
professionals, or your local agency on aging.
- Ask respite helpers what types of tasks they do.
You can get respite help from family, friends, neighbors,
coworkers, members of your religious or faith community,
government agencies, or nonprofit groups. Whatever you
do, remember that it isn't a failure on your part as a
caregiver if you need some help and time to yourself.
"We've gotten lots of
support, and some of it
comes from people we
expected it from. But a
lot has come from those
we don't know very well.
And others we do know
well have stayed away.
You just never know
with people."
- Jessie
Some people may not be able to help. This may hurt your
feelings or make you angry. It's especially hard coming
from the people that you expected help from. You might
wonder why someone wouldn't help you. There are a lot of
reasons. Some common ones are:
- Some people may have their own problems to cope with, or a lack of time.
- Some people are afraid of cancer or may have already had a bad experience with cancer. They
don't want to get involved and feel pain all over again.
- Some people believe it's best to keep a distance when people are struggling.
- Some people may not realize how hard things are for you. Or they may not understand
that you need help unless you ask for it directly.
- Some people feel awkward because they don't know how to show they care.
If people choose not to help, you may want to explain your needs to them and be direct about
what you are asking. Or you can just let it go. But if the relationship is important, you may want to
tell the person how you feel. This can help prevent resentment or stress from building up. These
feelings could hurt your relationship in the long run.
Roadblock | What Others Have Done |
"His cancer is a private
thing. I'd have to tell
people about it to get
any support."
|
You and your loved one can decide who to tell, what to tell them,
and when and how. Some options are to:
- Tell only a few people close to you for now.
- Limit specifics about what you share. You can say, "He's
sick," or "She isn't feeling well today."
- Ask another family member, friend, or member of your
faith community to break the news.
- Get help from services or agencies in your area instead of
from people you know.
|
"Everyone has a lot
going on. I don't
want to bother them or
put them out."
|
If you are worried about being a burden to others, here are some
things to think about:
- Many people probably want to help.
- If you let more people help, it can ease your workload.
- Would you want to help someone else who was in a similar
situation? Would you mind if they asked you to lend a hand?
|
"I can't explain it,
but I just don't feel
up to reaching out
right now."
|
Many people don't want support when they need it most. You may
often back away from your regular social life and from people in
general. You may feel that it's just too much work to ask for help.
Talk with someone you trust, such as a friend, member of the
faith community, or counselor. This person can help you sort out
your thoughts and feelings. They can also help you find ways to
get support.
|
"I have a duty to take
care of my family, myself."
|
Having a support system is a way of taking care of your family.
Giving some tasks to others lets you focus on those that you feel
you should do yourself.
|
"Our family is spread
throughout the U.S., so it's
hard to have a hands-on
experience. But the phone
calls have increased, with
them calling to say, 'I love
you, and what can I do to
help?' Even though there
isn't much they can do to
help, just to have them call
more has made it a little
lighter load."
- Patty
It can be really tough to be away from a loved one who has cancer. You may feel like you're
a step behind in knowing what is happening with her care. Yet even if you live far away, it's
possible for you to give support and be a problem-solver and care coordinator.
Caregivers who live more than an hour away from
their loved ones most often rely on the telephone or
e-mail as their communication link. But using these
to assess someone's needs can be limiting. Aside from
true medical emergencies, long-distance caregivers
are faced with judging whether situations can be dealt
with over the phone or require an in-person visit.
Many long-distance caregivers say that it helps to
explore both paid and volunteer ways to provide
support. Try to create a support network of people
who live near your loved one whom you could call
day or night in a crisis or just to check in. You could
also look into volunteer visitors, adult day care
centers, or meal delivery services in the area. Having
a copy of the local phone book for your loved one's
area can also give you quick access to resources.
Share a list of home, work, and cell phone numbers
with the health care team and others in case of
an emergency.
- Ask a local family member or friend to update you daily by e-mail. Or, consider
creating a Web site to share news about your loved one's condition and needs.
- Talk to electronic or computer experts to find out about other ways to connect with
people. New advances using video and the Internet are being made every day.
- Call a travel agent to find out if airlines or bus lines have special deals for patients
or family members. The hospital social worker may also know of other resources,
such as private pilots or companies that help people with cancer and their families.
- If you are traveling to see your loved one, time your flights or drives so that you
have time to rest when you return. Many long-distance caregivers say that they don't
allow themselves enough time to rest after their visits.
- Consider getting a phone card from a discount store to cut down on long-distance
bills. Or, review your long-distance and cell phone plans. See if you can make any
changes that would reduce your bills.
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