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Getting Support
Knowing Your Strengths and Limits
Why Getting Help Is Important
How Can Others Help You?
Who Can Help?
Be Prepared for Some People to Say "No"
Long-Distance Caregiving
"You have to learn that if
people offer, let them do
something. Tell them 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."
- Lynn
You may be faced with new challenges and concerns now
that your loved one has advanced cancer. If the illness has
been going on for a long time, these challenges may wear
you down even more. Many caregivers say that, looking
back, they took on too much themselves. Or they wish
they had asked for help sooner in sharing tasks or seeking
support. 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 others can do.
Many people probably want to help but don't know what
you need or whether you want help. And as the cancer
progresses, you may see changes in the support you get
from others. For example:
- People who have helped before may not help now.
- Others who have helped before may want to help in new ways now.
- People who haven't helped before may start helping now.
- Agencies that couldn't help before may offer services now.
"I have been the main
caregiver the whole time.
At first, we had emotional
support from the church and
friends and so on, but over
time they have just faded
off. I have been stressed
beyond belief."
- Marion
Many people don't want support when they need it most.
You may pull back from your regular social life and
people in general. You may feel that it's just too much
work to ask for help. Some caregivers have said that more
people helped them in the beginning. But as time went
on, they felt abandoned.
Accepting help from other people isn't always easy. When
tough things happen, some people tend to pull away.
They think, "We can handle this on our own." But things
can get harder as your loved one continues to go 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." They feel stretched to the point
that they can't do it anymore. As simple as it sounds, it's
good to remind others that you still need help.
Remember that getting help for yourself can also help
your loved one, as well as other friends and family.
- 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.
- Having a support system is a way of taking care of
your family. The idea is to remove some tasks so
that you can focus on those that you can do.
Talk with someone you trust, such as a friend, member of
your faith community, or counselor. Other people may be
able to help you sort out your thoughts and feelings.
They may also be able to help you find other ways to
get support.
"I was taking on way too
much. When I finally
asked, more people than
I expected were more
than willing to help."
- Laney
| Keeping a Balance
with Visitors |
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You may have many more people
calling you or coming by to visit
than ever before. Many caregivers
say they feel very blessed when
people show they care. Although
you probably are very thankful for
their love and support, there may
be times when you need some
space. It's okay if you need time to
yourself or just with your family.
Some things you can do are:
- Let your answering machine
pick up the messages.
- Answer the phone in shifts.
Take turns with family members
or friends to be in charge of
calls for a few hours.
- Put a sign on the door of your
home or hospital room thanking
people for coming by, but let
them know your loved one is
resting. Leave room for a note
if they want to leave one.
- Have a friend in your home
handle visitors while you can
be in another part of your home
taking care of your own needs.
- Go to a place where you can't
be reached for a while.
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Many people want to help, but they don't know what you
need or how to offer help. It's okay for you to take the first
step. Ask for what you need and for those things that would
help you most. For instance, you may want someone to:
- Help with household chores, including cooking,
cleaning, shopping, yard work, and childcare
or eldercare.
- Talk and share your feelings.
- Drive your loved one to appointments.
- Pick up a child from school or activities.
- Pick up a prescription.
- Look up information you need.
- Be the contact person and help keep others updated on your loved one.
"The people that I had
thought would help me
weren't there. It was
the ones that I really
didn't expect to help
that were right there
saying, 'I'm here.
What can I do?'"
- Antoine
Think about people who can help you with tasks. Besides friends and family, think of all the
people and groups you and your loved one know. Some examples are neighbors, coworkers, and
members of your faith community. The hospital or cancer center may be able to tell you about
services they offer or give you a list of agencies to call. Social workers can also put you in touch
with support services.
Some people may choose not to help. This may hurt your feelings or make you angry. It's
especially hard coming from those you expected to help you. You might wonder why someone
wouldn't help you. There are a lot of reasons. Some common ones are:
- Some may be coping with their own problems. Or they may not have enough 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 that pain again.
- Some 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.
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"My brother is getting
worse - he had a bad
reaction the other day. I felt
so helpless since he was in
Colorado and I was here in
Georgia. I try to call when
I can, but it's so frustrating
not knowing for sure what's
going on. I don't like feeling
so removed."
- Deondra
It can be really tough to be away from your loved
one with cancer. You may feel like you're always a
step behind in knowing what's happening with
care. Yet even if you live far away, it's possible for
you to give support and be a care coordinator.
Caregivers who live more than an hour away often
rely on the telephone or e-mail as their link. But
assessing someone's needs this way can be limiting.
You know that you would rush to your loved one's
side for a true medical emergency. But other
situations are harder to judge. When can you
handle things by phone, and when do you need to
be there in person?
Many caregivers say that it helps to explore both
paid and volunteer support for the patient. Try to
create a support network of people who live nearby.
These should be people who you could call day or
night and count on in times of crisis. You may also want them to check in with your loved
one from time to time.
You could also look into volunteer visitors, adult daycare 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. Give your phone
numbers to your loved one's health care team and others for emergencies.
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 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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