For more information

The following booklets may be helpful if your loved one is

receiving cancer treatment:
cnemornerap, and You
cop|ng w|rn Ad.anced cancer
iar|ng n|nrs jor cancer |ar|enrs
1ak|ng |arr |n cancer 1rearmenr kesearcn :rud|es
|a|n conrro|
kad|ar|on 1erap, and You
1ak|ng 1|me
1|nk|ng Aoour comp|emenrar, and A|rernar|.e Ved|c|ne
wnen cancer kerurns
These booklets are available from the National
Cancer Institute (NCI). To learn more about specific
types of cancer or to download any of these booklets,
visit NCIs website (http://www.cancer.gov). You can
also call NCIs Cancer Information Service toll-free at
1-800-4-CANCER (1-800-422-6237) to speak with an
information specialist.
We would like to oer our sincerest gratitude to the
extraordinary caregivers, health professionals, and
scientists who contributed to the development and
review of this publication.
When Someone You Love
Is Being TreaIed lor Cancer
Ycu dchrtclg rccd tc lcnrr vngs tc tnkc
cnrc cl gcurscll. Bccnusc l gcu'rc rct tnkrq
cnrc cl gcurscll, gcu cnr't tnkc cnrc cl
nrgcrc clsc. Dcr't uc nlrnd tc nsk qucstcrs
nrd dcr't uc nlrnd tc nsk lcr lclp.' -
Frnrcs
Te purpose of this book
is to focus on you and your needs.
Weve heard from many caregivers about things they wish
they had known early on. We have collected their tips in
this booklet. Some of the tips seem simple, but they may
not always be easy to do.
Use this booklet in whatever way works best for
you. You can read it from front to back. Or you can just
refer to dierent sections as you need them.
No two people are alike. Some chapters of this
booklet may apply to you, while others may not. Or
you may nd that some sections are more useful
to you later.
Terms Used: Tis 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.
Other booklets for caregivers that can be download
from the NCI website are:
lac|ng lorward wnen :omeone You Lo.e nas
comp|ered cancer 1rearmenr
wnen :omeone You Lo.e nas Ad.anced cancer

wnen Your |arenr nas cancer A cu|de lor 1eens

wnen Your 8rorner or :|srer nas cancer
A cu|de jor 1eens
Table of Contents
Who Is a Caregiver7 .......................................................................1
AdjusIing Io Being a Caregiver ......................................................3
Caring lor Your Mind, Body, and SiriI .......................................10
Talking wiIh Ihe HealIh Care Team .............................................1
Talking wiIh Eamily and Eriends .................................................21
Lile Flanning ................................................................................37
RellecIio .....................................................................................40
Caregivers Bill ol RighIs ..............................................................41
Resources ......................................................................................42
1
Who Is a Caregiver?
This bookleI is lor you il youre heling your loved one
geI Ihrough cancer IreaImenI. You are a "caregiver." You
may noI Ihink ol yoursell as a caregiver. You may see whaI
youre doing as someIhing naIuralIaking care ol someone
you love.
There are dillerenI Iyes ol caregivers. Some are lamily
members, while oIhers are lriends. Every siIuaIion is
dillerenI. So Ihere are dillerenI ways Io give care. There
isnI one way IhaI works besI.
1lcrc nrc ctlcr
uccklcts nvnlnulc tlnt
tnlk nucut lcv tc qvc
cnrc tc n lcvcd crc.
But tlc purpcsc cl tls
uccklct s tc lccus cr
!"# nrd !"#$ &''().
Caregiving can mean heling wiIh day-Io-day acIiviIies
such as docIor visiIs or rearing lood. BuI iI can also be
long-disIance, coordinaIing care and services lor your loved one by hone or email. Caregiving
can also mean giving emoIional and siriIual suorI. You may be heling your loved one coe
and work Ihrough Ihe many leelings IhaI come u aI Ihis Iime. Talking, lisIening, and jusI being
Ihere are some ol Ihe mosI imorIanI Ihings you can do.
Giving care and suorI during Ihis challenging Iime isnI always easy. The naIural resonse ol
mosI caregivers is Io uI Iheir own leelings and needs aside. They Iry Io locus on Ihe erson wiIh
cancer and Ihe many Iasks ol caregiving. This may be line lor a shorI Iime. BuI iI can be hard Io
kee u lor a long Iime. And iIs noI good lor your healIh. Il you donI Iake care ol yoursell, you
wonI be able Io Iake care ol oIhers. Its important for everyone that you give care to you.
tlrk gcu cnr uc tlc ucst cnrcqvcr gcu
cnr uc ug tnkrq cnrc cl gcurscll, ug trgrq
tc qct ns wucl rlcrwntcr ns pcssulc, nrd
ug lcttrq gcurscll lcnr cr tlc pccplc vlc
nrc vllrq tc lclp gcu.' -Lcrccc
3
Adjusting to Being a Caregiver
Changing Roles
WheIher youre younger or older, you may lind yoursell in a new role as a caregive . You may
have been an acIive arI ol someones lile belore cancer, buI erhas now Ihe way you suorI
IhaI erson is dillerenI. II may be in a way in which you havenI had much exerience, or in
a way IhaI leels more inIense Ihan belore. Even Ihough caregiving may leel new Io you now,
many caregivers say IhaI Ihey learn more as Ihey go Ihrough Iheir loved ones cancer exerience.
Common siIuaIions IhaI Ihey describe:
Your souse or arIner may leel comlorIable wiIh only you Iaking care ol him.
Your arenI may have a hard Iime acceIing hel lrom you (her adulI child) since shes
always been used Io caring lor you.
Your adulI child wiIh cancer may noI wanI Io rely on his arenIs lor care.
You may have healIh roblems yoursell, making iI hard hysically and emoIionally Io Iake
care ol someone else.
Orcc n vcck, nltcr tnkc
tlc kds tc sclccl, tnkc /cw
tc lcr dcctcr's nppcrtwcrt.
1lcr tnkc lcr lcwc nrd hx
lcr lurcl nrd st vtl lcr
nvllc. 5lc nrqucs vtl wc
cvcrg twc uccnusc slc vnrts
tc dc t lcrscll. t's lnrd lcr
lcr tc lnvc tc rclg cr wc.'
-Lgrr
Coping with Your Feelings
Youve robably lelI a range ol leelings as you care
lor your loved one. They can be quiIe sIrong and may come and go as you go Ihrough IreaImenI
wiIh Ihe aIienI. Many caregivers describe iI as being "like a rollercoasIer." You may leel sad, alraid,
angry, and worried. There is no righI or wrong way Io leel or reacI. Tese feelings are all normal.
You may relaIe Io all ol Ihe leelings on Ihe nexI age, or jusI a lew. You may leel Ihem aI
dillerenI Iimes, wiIh some days being beIIer Ihan oIhers. II may hel Io know IhaI oIher
caregivers have lelI Ihe same way IhaI you do. One ol Ihe lirsI sIes in coing wiIh leelings is Io
recognize IhaI Ihey exisI and IhaI having Ihem is normal. Try Io give yoursell Iime Io undersIand
and work Ihrough your range ol emoIions.
WhaIever your roles are now, acceIing Ihe
changes may be Iough. IIs very common Io leel
conlused and sIressed aI Ihis Iime. Il you can,
Iry Io share your leelings wiIh oIher loved ones
or join a suorI grou. Or you may choose Io
seek hel lrom a counselor or sychologisI. Many
caregivers say IhaI Ialking wiIh a counselor heled
Ihem. They leel Ihey were able Io say Ihings IhaI
Ihey werenI able Io say Io Iheir loved ones. See
"Talking wiIh Eamily and Eriends" on age 21 lor
more Iis.
4
Anger. Many caregivers say Ihey olIen leel angry
wiIh Ihemselves, Iheir lamily members, or Ihe
aIienI. SomeIimes anger comes lrom leelings IhaI
are hard Io show, such as lear, anic, or worry. Or
iI may come lrom resenImenI ol all IhaI youre
going Ihrough. Il you can, Iry Io avoid lashing ouI
aI oIhers because ol Ihese emoIions. Anger can
be healIhy il you handle iI Ihe righI way. II can
hel moIivaIe you Io Iake acIion, lind ouI more,
or make osiIive changes in your lile. BuI il Ihese
leelings ersisI and you remain angry aI Ihose
around you, seek hel lrom a counselor or oIher
menIal healIh rolessional.
t's cwctcrnllg cxlnustrq,
nrd rcvcr krcv vlnt tc
cxpcct. Orc wrutc, tlrqs nrc
lcckrq up. 1lcr n ccuplc cl
lcurs lntcr, scwctlrq lnppcrs
nrd dcr't lnvc tlc nrsvcrs.'
-Dnvd
Grief. You may be mourning Ihe loss ol whaI you hold mosI dearyour loved ones healIh or
Ihe lile you had wiIh each oIher belore cancer. IIs imorIanI Io give yoursell ermission Io
grieve Ihese losses. II Iakes Iime Io work Ihrough and acceI all Ihe changes IhaI are occurring.
Guilt. Eeeling guilIy is a common reacIion lor caregivers. You may worry IhaI you arenI heling
enough, or IhaI your work or disIance lrom your loved one is geIIing in Ihe way. You may even
leel guilIy IhaI youre healIhy. Or you may leel guilIy lor noI acIing ubeaI or cheerlul. BuI know
IhaI iIs okay. You have reasons Io leel useI, and hiding Ihese leelings may kee oIher eole
lrom undersIanding your needs.
Anxiety and depression. AnxieIy means you have exIra worry, you canI relax, you leel Iense, or
you have anic aIIacks. Many eole worry abouI how Io ay bills, how Ihe cancer will allecI Ihe
lamily, and ol course, how Iheir loved one is doing. Deression is a ersisIenI sadness IhaI lasIs
more Ihan Iwo weeks. Il any ol Ihese symIoms sIarI allecIing your abiliIy Io luncIion normally,
Ialk wiIh your healIh care rovider. DonI Ihink IhaI you need Io Iough iI ouI wiIhouI any hel.
There are ways your symIoms can be eased during Ihis hard Iime.
Hope or hopelessness. You may leel hoe or hoelessness Io dillerenI degrees IhroughouI your
loved ones cancer IreaImenI. And whaI you hoe lor may change over Iime. You may hoe lor
a cure mosI ol all. BuI you may also hoe lor oIher Ihings, such as comlorI, eace, acceIance,
and joy. Il youre noI able Io geI rid ol a leeling ol hoelessness, Ialk Io a IrusIed lamily member,
lriend, healIh rovider, or siriIual or laiIh leader. As a caregiver, leelings ol hoe can geI you
Ihrough Ihe nexI S minuIes or Ihe nexI S days.
1lcrc nrc twcs vlcr gcu dcr't
krcv lcv tc lclp. Ycu cnr't tnkc
nvng tlc pnr. Ycu cnr't tnkc
nvng tlc lrustrntcr. All gcu cnr
dc s uc tlcrc, nrd t's n vcrg
lclplcss lcclrq.' -Ccclc
Loneliness. You can leel alone in your
role as a caregiver, even il you have loIs
ol eole around you. IIs easy Io leel like
no one undersIands whaI youre going
Ihrough. You may leel lonely because you
have less Iime Io see eole and do Ihings
IhaI you used Io. WhaIever your siIuaIion,
you arenI alone. OIher caregivers share
your leelings. See age 12 lor ways Io
connecI wiIh oIhers.
5
Other Ways to Cope
Let go of mistakes. You canI be erlecI. No one is. The
besI we can do is Io learn lrom our misIakes and move on.
ConIinue Io do Ihe besI you can. And Iry noI Io execI Ioo
much lrom yoursell.
Cry or express your feelings. You donI have Io be ubeaI all
Ihe Iime or reIend Io be cheerlul. Give yoursell Iime Io coe
wiIh all Ihe changes youre going Ihrough. IIs okay Io cry and
show IhaI you are sad or useI.
Put your energy into the things that matter to you. Eocus on Ihe Ihings you leel are worIh
your Iime and energy. LeI Ihe oIher Ihings go lor now. Eor examle, donI lold Ihe cloIhes when
youre Iired. Go ahead and Iake Iime Io resI.
Understand where anger comes from. Your loved one may geI angry wiIh you. IIs very
common lor eole Io direcI Iheir leelings aI Ihose who are closesI. Their sIress, lears, and
worries may come ouI as anger. Try noI Io Iake iI ersonally. SomeIimes aIienIs donI realize Ihe
ellecI Iheir anger has on oIhers. So iI may hel Io share your leelings wiIh Ihem when Iheyre
calm. Try Io remember IhaI Ihe anger isnI really abouI you.
Forgive yourself. This is one ol Ihe mosI imorIanI Ihings you can do. Chances are IhaI you
are doing whaI you can aI Ihis momenI. Each new momenI and day gives you a new chance Io
Iry again.
Knowing Your Strengths and Limits
One way IhaI caregivers coe is Io locus Iheir energy on Ihings Ihey can conIrol. This can mean:
Heling schedule docIor visiIs
Heling wiIh daily needs such as meals and errands
Taking on your loved ones Iasks
Learning more abouI cancer and
IreaImenI oIions
Doing whaIever else you can do
Many caregivers say IhaI, looking back, Ihey Iook on
Ioo much Ihemselves. Or Ihey wish Ihey had asked
lor hel sooner. Take an honesI look aI whaI you
can and canI do. WhaI Ihings do you need or wanI
Io do yoursell7 WhaI Iasks can you give Io or share
wiIh oIhers7 Be willing Io leI go ol Ihings IhaI arenI
essenIial lor you Io do.
Grcvrq up, vc vcrc
tnuqlt tvc rulcs. Orc
s, Dcr't svcnt tlc
swnll stull.' Ard scccrd,
Evcrgtlrq s swnll stull.'
Ard gcu lnvc tc dccdc
vlnt's wpcrtnrt tc gcu.
Fccus cr vlnt gcu cnr
dc, rct vlnt gcu cnr't.'
-Jnwcs
6
Setting Your Priorities
Make a lisI ol your weekly Iasks and acIiviIies. Eigure
ouI how much Iime you send on each one and how
imorIanI iI is. ScraIch Ihings oll your Io-do lisI il Ihey
arenI imorIanI. ThaI will give you more Iime lor Ihe
Ihings you really wanI and need Io do. This may mean
disaoinIing someone else. BuI you need Io Iake care
ol whaIs imorIanI Io you, regardless ol whaI oIhers
may Ihink. MosI eole will undersIand il you Iell
Ihem whaI is going on.
Ycu lnvc tc lcnrr tlnt l
pccplc cllcr, lct tlcw dc
scwctlrq. Ask lcr vlnt
gcu rccd, uccnusc tlcg
dcr't krcv. Ycu lnvc tc
uc vllrq tc lct qc cl gcur
prdc nrd lct tlcw lclp
gcu.' -Clcvcrrc
Why Getting Help Is Important
AcceIing hel lrom oIhers isnI always easy. When Iough Ihings haen, many eole Iend Io
ull away. They Ihink, "We can handle Ihis on our own." BuI Ihings can geI harder as Ihe aIienI
goes Ihrough IreaImenI. You may need Io change your schedule and Iake on new Iasks. As a
resulI, many caregivers have said, "Theres jusI Ioo much on my laIe."
Remember IhaI geIIing hel lor yoursell can also hel your loved one because:
You may sIay healIhier.
Your loved one may leel less guilIy abouI all Ihe Ihings IhaI youre doing.
Some ol your helers may oller Iime and skills IhaI you donI have.
How Can Others Help You?
Would you lind iI hellul il someone made dinner lor you or ran some ol your errands7 Il so, you
may beneliI lrom having eole hel wiIh Iasks you don I have Iime Io do.
Feole wanI Io hel, buI many donI know whaI you need or how Io oller iI. IIs okay lor you Io
Iake Ihe lirsI sIe. Ask lor whaI you need and lor Ihe Ihings IhaI would be mosI hellul Io you.
Eor examle, you may wanI someone Io:
Hel wiIh household chores, such as
cooking, cleaning, shoing, yard work,
and childcare or eldercare
Talk wiIh you and lisIen Io your leelings
Drive your loved one Io aoinImenIs
Fick u a child lrom school or acIiviIies
SeI u a websiIe where eole can lind ouI
whaI suorI you need or receive udaIes
on your loved one
Look u inlormaIion IhaI you need
Be Ihe conIacI erson and hel kee oIhers
udaIed on your loved ones siIuaIion
7
Who Can Help?
Think abouI eole who can hel you wiIh Iasks. Think ol all Ihe eole and grous you know,
including lamily, lriends, neighbors, and coworkers. Members ol your laiIh communiIy, civic
grous, and associaIions may also be able Io hel. The hosiIal or cancer cenIer may also be able
Io Iell you abouI services Ihey oller, or have a lisI ol agencies Io call.
Finding Respite Help
ResiIe (RES-iI) helers send Iime wiIh your loved one. They can be aid or may volunIeer
Iheir Iime. Many caregivers say Ihey wish Ihey had goIIen resiIe hel sooner. II can leave you
lree Io resI, see lriends, run errands, or do whaIever youd like Io do. ResiIe caregivers can
also hel wiIh hysical demands, such as lilIing Ihe aIienI inIo a bed or a chair. Il Ihis service
aeals Io you, you may wanI Io:
Talk wiIh your loved one abouI having someone
come inIo your home Io hel ouI lrom Iime
Io Iime.
GeI relerrals lrom lriends, healIh care rolessionals,
or your local agency on aging.
Ask resiIe helers whaI Iyes ol Iasks Ihey do.
You can geI resiIe hel lrom lamily and lriends, buI
also governmenI agencies or nonroliI grous. WhaIever
you do, remember IhaI iI isnI a lailure on your arI as a
caregiver il you need some hel and Iime Io yoursell.
vc'vc qcttcr lcts cl
suppcrt, nrd scwc cl t
ccwcs lrcw pccplc vc
cxpcctcd t lrcw. But n
lct lns ccwc lrcw tlcsc
vc dcr't krcv vcrg vcll.
Ard ctlcrs vc dc krcv
vcll lnvc stngcd nvng.
Ycu ust rcvcr krcv
vtl pccplc.' -Jcssc
Be Prepared for Some People to Say No
SomeIimes eole may noI be able Io hel. This may
hurI your leelings or make you angry. II may be esecially hard coming lrom eole IhaI you
execIed hel lrom. You mighI wonder why someone wouldnI oller Io hel you. Some common
reasons are:
Some eole may be coing wiIh Iheir own roblems, or a may noI have Ihe Iime.
They are alraid ol cancer or may have already had a bad exerience wiIh cancer. They donI
wanI Io geI involved and leel ain all over again.
Some eole believe iIs besI Io kee a disIance when eole are sIruggling.
SomeIimes eole donI realize how hard Ihings really are lor you. Or Ihey donI undersIand
IhaI you need hel unless you ask Ihem lor iI direcIly.
Some eole leel awkward because Ihey donI know how Io show Ihey care.
Il someone isnI giving you Ihe hel you need, you may wanI Io Ialk Io Ihem and exlain your
needs. Or you can jusI leI iI go. BuI il Ihe relaIionshi is imorIanI, you may wanI Io Iell Ihe
erson how you leel. This can hel revenI resenImenI or sIress lrom building u. These leelings
could hurI your relaIionshi in Ihe long run.
8
Tips on How to Ask for Help
Roadblock What Others Have Done
His cancer is a private
thing. Id 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 specics about what you share. You can say,
Hes sick, or She isnt feeling well today.
Ask another family member, friend, or member of
your faith or spiritual community to share the news.
Get help from services or agencies in your area instead
of from people you know.
Everyone has a lot
going on. I dont want
to bother them or put
them out.
If youre 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 cant explain it, but
I just dont feel up to
reaching out right now.
Many people dont 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 its just
too much work to ask for help.
Talk with someone you trust, such as a friend, member of
your faith community, or counselor. Tis person can help
you sort out your thoughts and feelings. Tey can also
help you nd ways to get support.
Its my duty to take
care of my family, not
someone elses.
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.
9
Long-Distance Caregiving
II can be really Iough Io be away lrom a loved one who has cancer. You may leel like youre
a sIe behind in knowing whaI is haening wiIh her care. YeI even il you live lar away, iIs
ossible lor you Io give suorI and be a roblem-solver and care coordinaIor.
Caregivers who live more Ihan an hour away lrom Iheir loved ones mosI olIen rely on Ihe
Ielehone or email as Iheir communicaIion link. BuI using Ihese Io assess someones needs can
be limiIing. Aside lrom Irue medical emergencies, long-disIance caregivers are laced wiIh judging
wheIher siIuaIions can be dealI wiIh over Ihe hone or require an in-erson visiI.
Finding Contacts
Many long-disIance caregivers say IhaI iI hels Io exlore
boIh aid and volunIeer ways Io rovide suorI. Try Io
creaIe a suorI neIwork ol eole who live near your
loved one whom you could call day or nighI in a crisis
or jusI Io check in. You could also look inIo volunIeer
visiIors, adulI day care cenIers, or meal delivery services
in Ihe area. Having a coy ol Ihe local hone book lor
your loved ones area or a lisI ol websiIes can also give
you quick access Io resources. Share a lisI ol home, work,
and cell hone numbers wiIh Ihe healIh care Ieam and
oIhers in case ol an emergency.
Our lnwlg s sprcnd
tlrcuqlcut tlc U.5., sc t's
lnrd tc lnvc n lnrds-cr
cxpcrcrcc. But tlc plcrc
cnlls lnvc rcrcnscd, vtl
tlcw cnllrq tc sng, lcvc
gcu, nrd vlnt cnr dc lcr
gcu?' Evcr tlcuql tlcrc
sr't wucl tlcg cnr dc tc
lclp wc vtl /cw, ust tc
lnvc tlcw cnll wcrc lns
wndc t n lttlc ucttcr.'
-Pnttg
Other Tips
Ask a local lamily member or lriend Io udaIe
you daily by email. Or, consider creaIing a Web
siIe Io share news abouI your loved ones condiIion
and needs.
Talk Io elecIronic or comuIer exerIs Io lind ouI abouI oIher ways Io connecI wiIh eole.
New advances using video and Ihe InIerneI are being made every day.
Airlines or bus lines may have secial deals lor aIienIs or lamily members. The hosiIal
social worker may also know ol oIher resources, such as rivaIe iloIs or comanies IhaI hel
eole wiIh cancer and Iheir lamilies.
Il you are Iraveling Io see your loved one, Iime your llighIs or drives so IhaI you have Iime
Io resI when you reIurn. Many long-disIance caregivers say IhaI Ihey donI allow Ihemselves
enough Iime Io resI alIer Iheir visiIs.
Consider geIIing a hone card lrom a discounI sIore Io cuI down on long-disIance bills. Or,
review your long-disIance and cell hone lans. See il you can make any changes IhaI would
reduce your bills.
10
Caring for Your Mind, Body, and Spirit
Make Time for Yourself
You may leel IhaI your needs arenI imorIanI righI now. Or maybe by Ihe Iime youve Iaken
care ol everyIhing else you have Io do, Iheres no Iime lelI lor yoursell. Or you may leel guilIy
IhaI you can enjoy Ihings IhaI your loved one canI righI now.
MosI caregivers say Ihey have Ihose same leelings. BuI caring lor your own needs, hoes, and
desires is imorIanI Io give you Ihe sIrengIh Io carry on. (See Ihe Caregivers Bill ol RighIs on
age 41.)
Taking Iime Io recharge your mind, body, and siriI can hel you be a beIIer caregiver. You may
wanI Io Ihink abouI:
Einding nice Ihings you can do lor yourselleven jusI a lew minuIes can hel
CuIIing back on ersonal acIiviIies, raIher Ihan cuIIing Ihem ouI enIirely
Einding Ihings oIhers can do or arrange lor you, such as aoinImenIs or errands
Looking lor easy ways Io connecI wiIh lriends
Einding larger chunks ol "oll-duIy" Iime
Myths About Taking Care of Yourself
*
Myth Fact
1ak|ng care oj m,se|j
means rnar | na.e ro oe
awa, jrom m, |o.ed one"
You can do things to take care of yourself with or
without your loved one in the room with you. Whats
important is that you do not neglect yourself.
1ak|ng care oj m,se|j
rakes a |or oj r|me awa,
jrom orner rn|ngs"
Some self-care takes only a few minutes, such as
reading an upbeat passage from a book. Other self-
care can be done in moments between longer tasks.
|'d na.e ro |earn now
ro jocus on m,se|j | don'r
know |j | can srarr"
Whenever things make you feel happier, lighter,
more relaxed, or more energized, these count as
taking care of yourself. Tink of things that you
already know work for you.
* Te Hospice of the Florida Suncoast. car|ng lor Yourse|j wn||e car|ng lor Crners, Adapted with permission.
11
Ways to Nurture Yourself
Take Stock of Your Own Feelings
Giving yoursell an ouIleI lor your own IhoughIs and
leelings is imorIanI. Think abouI whaI would hel
lilI your siriIs. Would Ialking wiIh oIhers hel ease
your load7 Or would you raIher have quieI Iime by
yoursell7 Maybe you need boIh, deending on whaIs
going on in your lile. IIs hellul lor you and oIhers
Io know whaI you need.
ust rccd scwc quct
twc. l wg lusunrd's
tnkrq n rnp, vll rcnd
n ucck cr st cr tlc pcrcl
uccnusc scwctwcs t's
sc rtcrsc. vc lnvc dngs
vlcrc vc qc strnqlt lrcw
clcwc tc rndntcr. t cnr
uc vcrg trrq.' -Adclc
Find Comfort
Your mind needs a break lrom Ihe demands ol caregiving. Think abouI whaI gives you comlorI
or hels you relax. Caregivers say IhaI even a lew minuIes a day wiIhouI inIerruIions hels
Ihem Io coe and locus.
Take 1S30 minuIes each day Io do someIhing lor yoursell, no maIIer how small iI is. ("See Small
Things I Can Do lor Me" on age 12.) Eor examle, caregivers olIen lind IhaI Ihey leel less Iired
and sIressed alIer lighI exercise. Try Io make Iime lor Iaking a walk, going lor a run, or doing
genIle sIreIches.
You may lind IhaI iI s hard Io relax even
when you have Iime lor iI. Some caregivers
lind iI hellul Io do exe cises designed Io
hel you relax, such as sIreIching or yoga.
OIher relaxing acIiviIies include Iaking dee
breaIhs or jusI siIIing sIill.
12
Join a Support Group
SuorI grous can meeI in
erson, by hone, or over
Ihe InIerneI. They may hel
you gain new insighIs inIo
whaI is haening, geI ideas
abouI how Io coe, and hel
you know IhaI youre noI
alone. In a suorI grou,
eole may Ialk abouI Iheir
leelings, Irade advice, and
Iry Io hel oIhers who are
dealing wiIh Ihe same kinds
ol issues. Some eole like
Io go and jusI lisIen. And
oIhers reler noI Io join suorI grous aI all. Some eole
arenI comlorIable wiIh Ihis kind ol sharing.
vlnt rccd nt
lcnst crcc cr tvcc
n vcck s tc tnlk
tc crc pcrscr cr
n qrcup cl pccplc
vlc nrc r tlc
snwc slccs ns
nw.' -Vrcc
Talk to a Counselor
You may be leeling overwhelmed and leel like Ialking
Io someone ouIside your inner circle ol suorI. Some
caregivers lind iI hellul Io Ialk Io a counselo , social
worker, sychologisI or oIher menIal healIh rolessional.
OIhers also lind iI hellul Io Iurn Io a leader in Iheir laiIh
or siriIual communiIy. All may be able Io hel you Ialk
abouI Ihings IhaI you donI leel you can Ialk abouI wiIh
your loved one or oIhers around you. You also mighI lind
ways ol exressing your leelings and learn ways ol coing
IhaI you hadnI IhoughI ol belore.
Connect with Your Loved One
Cancer may bring you and your loved one IogeIher more
Ihan ever belore. OlIen eole become closer as Ihey lace
challenges IogeIher. Il you can, Iake Iime Io share secial
momenIs wiIh one anoIher. Try Io gain sIrengIh lrom all
you are going Ihrough IogeIher, and whaI you have dealI
wiIh so lar. This may hel you move Ioward Ihe luIure
wiIh a osiIive ouIlook and leelings ol hoe.
Small Tings
I Can Do for Me
Each day, take some time to
do something for yourself, no
matter how small it is. Tis
might include:
Napping
Exercising or 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 email
You may nd that its hard to
relax even when you have time
for it. Some caregivers nd it
helpful to do exercises such as
deep breathing or meditating.
Il you canI lind a grou in your area, a suorI
grou on Ihe InIerneI. Some caregivers say Web siIes
wiIh suorI grous have heled Ihem a loI.
13
Connect with Others
SIudies show IhaI connecIing wiIh oIher eole is
very imorIanI Io mosI caregivers. IIs esecially
hellul when you leel overwhelmed or wanI Io say
Ihings IhaI you canI say Io your loved one. Try Io
lind someone you can really oen u Io abouI your
leelings or lears. You may lind iI hellul Io Ialk wiIh
someone ouIside Ihe siIuaIion. Also, iI may hel Io
have an inlormal neIwork ol eole Io conIacI, eiIher
by hone or in erson. BuI il youre concerned abouI
a caregiving issue, you may wanI Io Ialk wiIh your
loved ones docIor. Knowledge can hel reduce lears.
t's ckng lcr n rcqlucr
tc nsk lcv 'w dcrq
vlcr tlcg vnrt tlc
nrsvcr tc uc, 'w hrc.'
But vlcr 'w rcnllg rct
hrc, nll rccd s tc tnlk
tc scwccrc vlc cnr
urdcrstnrd, cr ust lcnr
wc cut. Ycu dcr't lnvc tc
lnvc nr nrsvcr, ust lstcr
tc wc.' -Kntlg
Look for the Positive
II can be hard linding osiIive momenIs when youre
busy caregiving. II can also be hard Io adjusI Io your role as a caregiver. Caregivers say IhaI
looking lor Ihe good Ihings in lile hels Ihem leel beIIer. Once a day, Ihink abouI someIhing IhaI
you lind rewarding abouI caregiving, such as graIiIude youve received, or exIra suorI lrom a
healIh care rovider. You mighI also Iake a momenI Io leel good abouI anyIhing else lrom Ihe
day IhaI is osiIivea nice sunseI, a hug, or someIhing lunny IhaI you heard or read.
Let Yourself Laugh
IIs okay Io laugh, even when your loved one is in
IreaImenI. In lacI, iIs healIhy. LaughIer releases
Iension and makes you leel beIIer. You can read
humor columns, waIch comedy shows, or Ialk wiIh
ubeaI lriends. Or jusI remember lunny Ihings IhaI
have haened Io you in Ihe asI. Keeing your
sense ol humor in Irying Iimes is a good coing skill.
Write in a Journal
Research shows IhaI wriIing or journaling can hel
relieve negaIive IhoughIs and leelings. And iI may acIually hel imrove your own healIh. You
can wriIe abouI any Ioic. You mighI wriIe abouI your mosI sIresslul exeriences. Or you may
wanI Io exress your deeesI IhoughIs and leelings. You can also wriIe abouI Ihings IhaI make
you leel good, such as a reIIy day or a kind coworker or lriend.
AnoIher Iechnique eole use is Io wriIe down whaIever comes Io mind. II doesnI have Io make
sense or have correcI grammar. II jusI hels Io geI all Ihe "jumble" ouI ol your mind and onIo
Ihe aer.
14
Be Tankful
You may leel Ihanklul IhaI you can be Ihere lor your loved one. You may be glad lor a chance
Io do someIhing osiIive and give Io anoIher erson in a way you never knew you could.
Some caregivers leel IhaI Iheyve been given Ihe chance Io build or sIrengIhen a relaIionshi.
This doesnI mean IhaI caregiving is easy. BuI linding meaning in caregiving can make iI
easier Io manage.
Do Your Usual Activities
Il you can, Iry Io kee doing some ol your regular acIiviIies. SIudies show IhaI noI doing Ihose
acIiviIies increases Ihe sIress you leel. Kee iI simle and sIick wiIh Ihings you do well. Be willing
Io change your rouIines. You may have Io do Ihings aI a dillerenI Iime ol day or lor less Iime
Ihan you do normally.
Learn More About Cancer
SomeIimes, undersIanding your loved ones medical siIuaIion can make you leel more conlidenI
and in conIrol. Eor examle, you may wanI Io know more abouI his sIage ol cancer. II may hel
you Io know whaI Io execI during IreaImenI, such as Ihe IesIs and rocedures IhaI will be done,
as well as Ihe side ellecIs IhaI will resulI. (See Ihe Resources secIion on age 42.)
Caring for Your Body
You may lind yoursell so busy and concerned abouI your loved one IhaI you don I ay aIIenIion
Io your own hysical healIh. BuI iIs very imorIanI IhaI you Iake care ol your healIh. Taking
care ol yoursell will give you sIrengIh Io hel oIhers.
New sIresses and daily demands olIen add Io any healIh roblems caregivers already have. And
il you are sick or have an injury IhaI requires you Io be carelul, iIs even more imorIanI IhaI you
Iake care ol yoursell. Here are some changes caregivers olIen have:
EaIigue (leeling Iired)
Weaker immune sysIem (oor abiliIy Io lighI oll illness
Slee roblems
Slower healing ol wounds
Higher blood ressure
Changes in aeIiIe or weighI
Headaches
AnxieIy, deression, or oIher mood changes
vlcr qct lcwc lrcw
clnss, wg wcw nrd
tnkc turrs rurrrq
vllc crc cl us stngs
vtl wg dnd. /g rur
s wg twc lcr wc,
nrd tlc crlg vng
cnr kccp t tcqctlcr.'
-/crcdtl
15
Taking Care of Yourself
These ideas lor Iaking care ol yoursell may sound easy. BuI Iheyre a challenge lor mosI
caregivers. Youll need Io ay aIIenIion Io how youre leeling, in boIh body and mind. Even
Ihough you may be uIIing someone elses needs lirsI, iI s imorIanI Io:
Keep up with your own checkups, screenings, and other medical needs.
Try to remember to take your medicines as prescribed. Ask your docIor Io give you a larger
rescriIion Io save Iris Io Ihe harmacy. Eind ouI il your grocery sIore or harmacy delivers.
Try to eat healthy meals. EaIing well will hel you kee u your sIrengIh. Il your loved one
is in Ihe hosiIal or has long docIors aoinImenIs, bring easy-Io-reare lood lrom home.
Eor examle, sandwiches, salads, or ackaged loods and canned meaIs liI easily inIo a lunch
conIainer.
Get enough rest. LisIening Io solI music or doing breaIhing exercises may hel you lall
aslee. ShorI nas can energize you il you arenI geIIing enough slee. Be sure Io Ialk wiIh
your docIor il lack ol slee becomes an ongoing roblem.
Exercise. Walking, swimming, running, or bike riding are only a lew ways Io geI your body
moving. Any kind ol exercise (including working in Ihe garden, cleaning, mowing, or going
u sIairs) can hel you kee your body healIhy. Einding aI leasI 1S-30 minuIes a day Io
exercise may make you leel beIIer and hel you manage your sIress.
Make time for yourself to relax. You may choose Io sIreIch, read, waIch Ielevision, or Ialk
on Ihe hone. WhaIever hels you unwind, you should Iake Ihe Iime Io do iI. IIs imorIanI
Io Iend Io your own needs and reduce your own sIress levels.
16
Do You Need Help with Depression or Anxiety?
As menIioned earlier, many ol Ihe Ihings lisIed below are normal. This is esecially
Irue when you are dealing wiIh a loI ol sIress. BuI il you have any ol Ihese signs lor
more Ihan Iwo weeks, leI your healIh care rovider know. He or she may have ideas
lor IreaImenI.
Changes in Your Feelings
Feelings of being worried, anxious,
blue, or depressed that dont
go away
Feeling guilty or worthless
Feeling overwhelmed, out of
control, or shaky
Feeling helpless or hopeless
Feeling grouchy or moody
Crying a lot
Toughts of hurting or killing
yourself
Focusing on worries or problems
Not being able to get a thought
out of your mind
Not being able to enjoy things
anymore (such as food, being
with friends, sex)
Avoiding situations or things that
you know are really harmless
Having trouble concentrating or
feeling scatterbrained
Feeling that you are losing it
Body Changes
Weight loss or weight gain
without meaning to
Trouble sleeping or needing
more sleep
Racing heartbeat
Dry mouth
Sweating a lot
Upset stomach
Diarrhea (loose, watery stools)
Slowing down physically
Fatigue that wont go away
Headaches or other aches
and pains
17
Finding Meaning During Cancer
Many caregivers lind IhaI cancer causes Ihem Io look aI lile in new ways. They may rellec
on siriIualiIy, Ihe urose ol lile, and whaI Ihey value mosI. IIs normal Io view Ihe cancer
exerience boIh negaIively and osiIively aI Ihe same Iime. You and your loved one may be
sIruggling Io undersIand why cancer has enIered your lives. You may wonder why you have Io
endure such a Irial in your lile.
The way cancer allecIs ones laiIh or religion is dillerenI lor everyone. Some Iurn away lrom Iheir
religion, while oIhers Iurn Ioward iI. IIs common Io quesIion ones laiIh alIer cancer. BuI lor
oIhers, seeking answers and searching lor ersonal meaning hels Ihem coe.
Many caregivers have lound IhaI Iheir laiIh, religion, or sense ol siriIualiIy is a source ol
sIrengIh as Ihey lace lile during cancer IreaImenI. Many say IhaI Ihrough Iheir laiIh, Ihey
have been able Io lind meaning in Iheir lives and make sense ol Ihe cancer exerience. EaiIh
or religion can also be a way lor caregivers and Iheir loved ones Io connecI wiIh oIhers in Iheir
communiIy. These may be eole who share similar exeriences or ouIlooks, or who can rovide
suorI. SIudies have also shown IhaI lor some, laiIh can be an imorIanI arI ol boIh coing
wiIh and recovering lrom cancer.
Here are ways you may lind comlorI and meaning Ihrough your laiIh or siriIualiIy
Reading maIerials IhaI are ulilIing and can hel you connecI Io a higher ower
Fraying or mediIaIing Io hel you leel less learlul or anxious
Talking abouI your concerns or lears wiIh a leader ol your laiIh or siriIual communiIy
Going Io religious or siriIual gaIherings Io meeI new eole
Talking Io oIhers who have had similar exeriences
Einding siriIual or laiIh-based resources lor eole dealing wiIh chronic illnesses like cancer
19
Talking with the Health Care Team
You will be asked Io do many Ihings during your loved ones IreaImenI. One ol your main roles
may be Io hel your loved one work wiIh his healIh care Ieam. You may be asked Io go Io docIor
visiIs, among oIher Ihings. A lew Iis are lisIed below.
Helping to Get Ready for Visits to the Doctor
Kee a lile or noIebook ol Ihe aIienI s medical inlormaIion. Include Ihe daIes ol rocedures
and IesIs. Bring Ihis lile Io docIor visiIs
Kee a lisI ol names and doses ol medicines and how olIen Ihey are Iaken. Bring Ihis lisI
wiIh you.
Use only IrusIed sources il you do research lor your loved one, such as governmenI and
naIional organizaIions.
Make a lisI ol quesIions and concerns. LisI Ihe mosI imorIanI quesIions lirsI
Call ahead ol Iime Io make sure ol Ihe lollowing:
The docIor has coies ol all needed IesI resulIs, records, and oIher aerwork.
You have direcIions, IransorIaIion, and, il needed, hoIel inlormaIion.
Il you and Ihe aIienI have a loI Io Ialk abouI wiIh Ihe docIor, ask wheIher:
You can have a longer aoinImenI (check on lees lor Ihis).
You can Ialk Io Ihe docIor by hone il Ihere are lurIher quesIions. Or erhas oIhers on
sIall can hel you. Eor examle, a nurse may be able Io answer many ol your quesIions.
Talk wiIh your loved one belore Ihe visiI Io hel reare yourselves lor Ihe ossibiliIy IhaI
Ihe inlormaIion given could be dillerenI Ihan whaI you boIh execI.
Talking with the Doctor
Il your loved one Iakes you wiIh him Io Ialk wiIh Ihe docIor, here are some Iis:
AlIer asking a quesIion, il youre unclear abouI Ihe answer, ask Ihe docIor Io exlain more Io
hel you undersIand.
Talk wiIh Ihe docIor abouI any medical advice you have lound on your own. Some advice
may be incorrecI or misleading, or may conllicI wiIh whaI Ihe docIor has Iold your loved one
Il a concern isnI being addressed, ask Ihe quesIion in a dillerenI way. This may hel Ihe
docIor undersIand your concern beIIer.
Take noIes or ask il you can Iae-record Ihe visiI.
Know IhaI your loved one has Ihe righI Io change docIors il he leels his needs arenI
being addressed.
Questions To Ask
About Treatment
What medical records,
or copies, would you
like us to bring?
What can my loved
one do beforehand to
prepare for treatment?
How long will the
treatment take?
Can my loved one go
to and from treatment
alone? Should someone
else go with him?
Can I or another family
member be with my
loved one during the
treatment?
What can I do to
help her feel more
comfortable during
the treatment?
What are the side eects
of the treatment?
After treatment, what
do we need to watch
for? When should we
call you?
How does ling
insurance claims work?
Who can help us if
we have questions
or problems?
20
Asking About Pain
People who have their pain managed are able to focus on
healing and on enjoying life. AlIhough dillerenI side ellecIs
haen wiIh cancer IreaImenI, ain is one IhaI can be esecially
Iroubling. Many caregivers say Ihe one Ihing Ihey hesiIaIe Io ask
abouI is ain. Il your loved one is reoccuied by ain, you may
noIice ersonaliIy changes. These mighI include being disIanI, noI
being able Io slee, or noI being able Io locus on daily acIiviIies.
Your loved one does not have to be in pain or discomfort. The
medical Ieam should ask regularly abouI ain levels, buI iIs u Io
you and your loved one Io be oen abouI any ain. Some eole
assume IhaI Ihere will always be severe ain wiIh cancer IreaImenI.
This is noI Irue. Fain can be managed IhroughouI your loved ones
IreaImenI. The key is Io Ialk regularly wiIh Ihe healIh care Ieam
abouI ain and oIher symIoms.
Sometimes people with cancer dont want to talk to their
health care team about their pain. They worry IhaI Ihe docIor
will Ihink IhaI Iheyre comlaining or IhaI ain means Ihe cancer
is geIIing worse. Or Ihey Ihink IhaI ain is jusI someIhing Ihey
have Io acceI. SomeIimes eole geI used Io Ihe ain and lorgeI
whaI iIs like Io live wiIhouI iI.
IIs imorIanI lor your loved one Io seak u. Or you can seak
u on his behall. Be honesI wiIh Ihe docIor abouI ain and how
iI is allecIing Ihe daily rouIine. You and your loved one may need
Io Ialk Io Ihe healIh care Ieam on a regular basis abouI Ihe ain
medicines given. These drugs can be adjusIed or changed il Ihey
arenI working or are causing unleasanI side ellecIs.
DonI be alraid Io ask lor sIronger ain relievers or larger doses il
your loved one needs Ihem. AddicIion is rarely an issue in eole
wiIh cancer. InsIead, drugs hel aIienIs sIay as comlorIable
as ossible. Feole wiIh a hisIory ol addicIion will wanI Io Ialk
wiIh Iheir docIor abouI any concerns. To learn more, see Ihe NCI
bookleI, Pain Control. (See inside cover.)
Should We Get a Second Opinion?
Some eole worry IhaI docIors will be ollended il Ihey ask lor
a second oinion. Usually Ihe oosiIe is Irue. MosI docIors
welcome a second oinion. And many healIh insurance
comanies will ay lor Ihem. Il your loved one geIs a second
oinion, Ihe docIor may agree wiIh Ihe lirsI docIor s IreaImenI
lan. Or Ihe second docIor may suggesI anoIher aroach. EiIher
way, your loved one has more inlormaIion and erhas a greaIer
sense ol conIrol. You can boIh leel more conlidenI abouI Ihe
decisions you make, knowing IhaI youve looked aI your oIions.
21
Talking with Family and Friends
Helping Children and Teens Cope
Children as young as 18 monIhs begin Io undersIand Ihe world around Ihem. IIs imorIanI
Io be honesI wiIh Ihem and exlain IhaI your loved one has cancer. ExerIs say IhaI Ielling
children Ihe IruIh abouI cancer is beIIer Ihan leaving Iheir imaginaIion lree Io draw conclusions
IhaI are worse Ihan realiIy.
Your own daily sIresses and lears can allecI how you acI wiIh your kids. You may be Iorn
beIween wanIing Io give Iime Io your kids, and knowing your loved one wiIh cancer also needs
your Iime. ThaIs why iIs good Io leI children know how youre leeling, as well as Io lind ouI
how Iheyre leeling. And never assume you know whaI your children are Ihinking. You canI
redicI how Ihey will reacI Io changes, losses, and inlormaIion.
This secIion rovides ideas lor heling children coe in healIhy ways.
1ls s tlc crlg clldlccd
tlcg vll cvcr lnvc, n
crucnl twc cl dcvclcpwcrt.
Clccsc tc scc gcur llrcss
rct ns nr custnclc uut ns
n pcvcrlul plntlcrw lrcw
vlcl gcur wcssnqcs nrc
nwplhcd, lclprq gcur
clldrcr urdcrstnrd nrd
uclcvc gcu nrd lccl gcur
lcvc r n pcvcrlul vng....
vlcr tlc lncts nrc ccuclcd
r lcvc nrd lcpclulrcss,
gcu cnr qudc gcur clldrcr
tcvnrd n llc-crlnrcrq
pcrccptcr cl rcnltg.'
-vcrdg Hnrplnw, /D*
Start Giving Information
Eor some lamilies, Ialking abouI serious issues is
uncomlorIable. BuI as hard as iI may be, not Ialking
abouI Ihese issues can be worse lor everyone. Here are
some Ihings you mighI wanI Io say Io children ol any
age abouI your loved ones cancer:
About Cancer
"NoIhing you did, IhoughI, or said caused Ihe cancer."
"You are noI resonsible lor making her well. BuI
Ihere are ways you can hel her leel beIIer while Ihe
docIors Iake good care ol her."
"You canI caIch cancer lrom anoIher erson."
"JusI because someone has cancer doesnI mean
oIher eole in Ihe lamily will geI iIeven laIer.
And IhaI includes you."
About Dealing with Cancer
"IIs okay Io be useI, angry, scared, or sad abouI
all Ihis. You may leel all kinds ol leelings. Youll
robably leel hay someIimes, Ioo. IIs line Io leel
all Ihese Ihings."
"No maIIer whaI haens, you will always be Iaken care ol."
"Feole may acI dillerenIly around you because Iheyre worried abouI you or worried
abouI all ol us."
* Harpham, W. 2004. wnen A |arenr nas cancer A cu|de ro car|ng lor Your cn||dren. New York, NY; Harper Paperbacks.
Adapted with permission.
23
Be Open to All Forms of Communication
Very young children may have Irouble Ialking abouI Ihe imacI ol Iheir arenIs illness on Ihem.
You mighI Iry asking Ihem Io draw a icIure ol Ihe erson wiIh cancer. Or have Ihem lay dolls,
wiIh one doll being Ihe aIienI. OIher lorms ol arI can hel older children exress Ihemselves.
Kee in mind IhaI young children may ask Ihe same quesIion over and over. This is normal, and
you should calmly answer Ihe quesIion each Iime. Teens may ask dilliculI quesIions or quesIions
lor which you donI have answers. Be honesI wiIh Ihem. When Ihe answer is noI known, you
can Ieach your Ieens Io live wiIh unanswerable quesIions and uncerIainIy. Remember IhaI
Ihinking Ihrough Ihese issues is arI ol your childrens rocess ol growing u.
Talking About Death*
Be reared lor your childrens quesIions and concerns abouI deaIh. They may worry, even il
your loved ones rognosis is good.
Teach Ihem IhaI cancer is an illness. Il your loved ones rognosis is good, leI Ihem know
IhaI Ihe Iye ol cancer he or she has is one lor which Ihe docIors have good IreaImenIs Io
geI him or her well again.
Ask Ihem whaI Ihey Ihink abouI your loved ones cancer and whaI Ihey worry abouI.
Then lisIen aIienIly Io Iheir answers. CorrecI misinlormaIion.
Tell Ihem Ihe IruIh, couched in love and hoelulness. InsIead ol Irying Io convince
Ihem ol a good ouIcome (someIhing IhaI you canI guaranIee), reassure Ihem IhaI your loved
one is geIIing good care, you are hoing lor a recovery, and IhaI your children can live well
wiIh Ihe uncerIainIy.
Teach your children IhaI even il Ihe unexecIed haened due Io cancer or anyIhing else,
Ihey would be Iaken care ol and be okay. AlIhough Ihey would leel sad lor a while and
Ihey would miss your loved one, Ihey would also leel IhaI love lorever and learn how Io be
hay again.
Remind Ihem IhaI your loved one is not dying now. Reassure Ihem IhaI you will Iell Ihem il
Ihis ever changes and dying becomes a ossibiliIy. Conclude by Ielling Ihem you execI and
hoe your loved one Io geI beIIer, and encourage Ihem Io locus on Ioday.
Stay Involved in Activities
II can be hard Io remain acIive in your childrens lives during your loved ones IreaImenI. BuI iI
may be more imorIanI Ihan ever Io do so. On Ihe nexI age are some ways IhaI oIher caregivers
have sIayed connecIed wiIh Iheir children.
* Harpham, W. 2004. wnen A |arenr nas cancer A cu|de ro car|ng lor Your cn||dren. New York, NY; Harper Paperbacks.
Adapted with permission.
24
Ways to Stay Involved in Your Childrens Lives
Focus on the most important activities.
Il you can only do one Ihing wiIh each ol your children, whaIs Ihe mosI imorIanI7
Make a lisI ol all Ihe oIions. Il ossible, geI Ihe childrens inuI. You may be
surrised by whaI Ihey choose.
Send someone else.
Is Ihere anoIher adulI in your childs lile who can go Io an evenI IhaI you canI7
Maybe Ihis adulI can videoIae or Iake icIures ol Ihe evenI.
Carpool.
Take Iurns driving wiIh oIher arenIs.
Be around before and after.
Try Io be around Io hel reare your children lor an acIiviIy and Io welcome
Ihem home.
Ask for a replay.
Il you canI be Ihere, siI down wiIh your children Io hear abouI whaI Ihey did.
Or have your children re-creaIe some ol Ihe Ihings IhaI haened.
Create new ways of connecting.
Come u wiIh new ways Io connecI wiIh your children. Make a oinI ol Iucking
Ihem in aI bedIime, reading Io Ihem, eaIing IogeIher, or Ialking on Ihe hone or by
email. Have a seI Iime when your children do homework while you do someIhing
else in Ihe same room. Or, Iake a walk IogeIher. Even S minuIes alone wiIh each child
wiIhouI inIerruIions can make a world ol dillerence.
Involve your children in your activities.
Could your children join you lor any ol your acIiviIies7 Even going Io Ihe grocery
sIore could be Iime senI IogeIher. Your children may leel secial il Ihey can aIIend
adulI evenIs wiIh you.
Stay involved with their schooling.
Check wiIh Iheir Ieachers Io lind ouI how your children are doing in school.
Or, ask a guidance counselor or coach lor inuI.
25
Understand Your Childrens Actions and Feelings
Children reacI Io a loved ones cancer in many dillerenI ways. They may:
Be conlused, scared, angry, lonely, or overwhelmed
Be scared or unsure how Io acI when Ihey see Ihe IreaImenIs ellecIs on your loved one
AcI clingy or miss Ihe aIIenIion Ihey used Io geI
Eeel resonsible or guilIy
GeI angry il Iheyre asked Io do more chores around Ihe house
GeI inIo Irouble aI school or neglecI Iheir homework
Have Irouble eaIing, sleeing, keeing u wiIh schoolwork, or relaIing Io lriends
Be angry IhaI someone else is Iaking care ol Ihem now
These behaviors are normal. SIill, your child may need exIra suorI Io deal wiIh Iheir Iroubles.
(See Ihe Iis on Ihe nexI age.)
Understanding Teens Feelings
WiIh Ieens, roblems may be less obvious or more comlicaIed Ihan wiIh younger children.
Here are some Ihings Io kee in mind:
Teens are suosed Io be moving Ioward indeendence lrom Iheir lamilies. This is naIural lor
Ihem. Cancer makes Ihis harder Io do, leading some Ieens Io acI ouI or wiIhdraw.
Teens may give oll Ihe message, "leave me alone." BuI Ihey sIill need and wanI your
aIIenIion and suorI.
Being a Ieen is always sIresslul. Some moods you see may have noIhing Io do wiIh your loved
ones illness.
Teens wanI Io leel "normal." Make sure IhaI Ihey
have Iime lor regular acIiviIies.
Kee Ihe lines ol communicaIion oen. Involve
Ieens in decisions as much as ossible. Make sure
IhaI Ihey have someone Io Ialk Io abouI whaI is
going on in Iheir lile.
II may be hard lor you Io sIay on Io ol your Ieens
acIiviIies and leelings righI now. Il so, ask anoIher
resonsible adulI Io sIay connecIed wiIh your Ieen.
Also, ask your social worker abouI InIerneI resources
lor Ihis age grou. Many organizaIions have online
chaIs and lorums lor suorI.
26
How Children May React, and What to Do
*
If your children seem confused or scared:
Remind Ihem IhaI you love Ihem.
SeI aside secial Iime IhaI each child can send wiIh
you or your loved one.
Try Io sIick Io reassuring rouIines, such as reading
bedIime sIories or checking in wiIh Ihem alIer school.
Be IogeIher, even il you are each doing dillerenI
Ihings in Ihe same room.
Freare children lor changes and side ellecIs ol
IreaImenI (such as hair loss, vomiIing, or Iiredness)
so Ihey wonI be surrised.
Remind your children IhaI your loved one may seem worse lor a while belore he
geIs beIIer. Exlain IhaI Ihis is arI ol Ihe IreaImenI IhaI can hel make him beIIer
in Ihe end.
If your children seem lonely or miss the attention they used to get:
Hel your children Ialk abouI Iheir leelings and ask you quesIions. LeI Ihem know
youre lisIening and validaIe Iheir leelings.
Eind new ways Io give your children aIIenIion. You may wanI Io leave noIes where
Ihey will lind Ihem or schedule secial hone conversaIions il youre sending a loI ol
Iime aI Ihe hosiIal or away lrom home.
Think ol a secial IreaI your children mighI enjoy.
Encourage Ihem Io Ialk wiIh oIher kids or adulIs Io ease Iheir loneliness.
If your children have stopped doing their regular activities:
II isnI okay lor your kids Io resond Io Ihe changes aI home by sIoing normal
acIiviIies or leIIing grades and lriendshis slide. Eind ouI why your children have
sIoed any usual acIiviIies. They may be:
Eeeling Iired
Eeeling unhay
Having Irouble geIIing along wiIh lriends
Unable Io concenIraIe or succeed
* J. I. Bromberg, C. S. McCabe, A. F. Patenaude. 2002. we can cope wnen a |arenr nas cancer. Newton, MA: Inexxion.
27
Talk abouI Ihe imorIance ol adjusIing Io Ihese changes aI home. Ask your children
how you can hel Ihem geI back Io Iheir normal rouIines.
If your children feel guilty and think they somehow caused the cancer:
SIaIe clearly, and remind Ihem, "You did noI cause Ihe cancer. You canI cause cancer
by anyIhing you do, Ihink, or say."
Exlain in simle ways how cancer develos.
Read a childrens book IogeIher IhaI Ialks abouI having a loved one wiIh cancer.
Ask a docIor or nurse Io exlain Ihe lacIs.
If your children feel angry or resentful that their own lives are aected:
(lor examle, having Io be quieI, doing
more chores, missing ouI on lun acIiviIies
wiIh lriends)
ValidaIe Iheir leelings. Talk wiIh
Ihem abouI whaIs causing Ihe anger.
Even Ihough you may know IhaI Ihe
anger comes lrom lear or laIigue, iIs
imorIanI Io lisIen Io whaI Ihey say
and acknowledge Iheir leelings.
Hel your children undersIand IhaI
Iheir anger may be a sIand-in lor
someIhing else. Maybe Iheyre really
angry aI Ihe cancer or aI Ihe lamily.
Maybe Iheyre scared or worried.
Or maybe Iheyre sad.
Do your besI Io Iry noI Io geI angry back aI Ihem. Again, Ihe anger is robably abouI
someIhing else.
If your children start to rebel or get into trouble:
Tell your children IhaI you undersIand how Ihey leel. You know IhaI Ihis siIuaIion
is hard.
Eind ouI il Ihey are acIing ouI ol lear, anger, loneliness, or boredom. WhaIever Ihe
leeling, remind Ihem IhaI iI is okay Io leel IhaI way. BuI iI is noI okay Io acI ouI in
Ihis way. Il necessary, ask a Ieacher, ediaIrician, or counselor lor advice and suorI.
28
Tips for Talking With Children of Dierent Ages
Youngest Children (25 years old)
Flan Io Ialk lor a very shorI Iime. Children Ihis age can
locus only lor briel eriods.
Be clear and simle. II may hel Io draw a icIure ol whaI
is haening.
Tell Ihem abouI any changes in Iheir rouIine lor Ihe day
or in Ihe near luIure.
Oller Io answer any quesIions and Io Ialk any Iime.
Young Children (69 years old)
Flan Io Ialk lor a shorI Iime. Children Ihis age can locus only lor briel eriods. Flan
more Ihan one Ialk Io cover whaI you need Io say.
Remember IhaI young children may have sIrong leelings. They may exress Ihem by
locusing on someIhing else during your Ialk. This is okay. II allows Ihem Io deal wiIh
inlormaIion and leelings aI Iheir own ace.
Use examles. You could remind Ihem ol a Iime when Ihey goI sick and wenI Io a
docIor Io geI beIIer.
Hel Ihem Io undersIand Ihe Ihings
IhaI will be haening soon. Children
Ihis age canI Ihink weeks or monIhs
inIo Ihe luIure.
LeI Ihem know Ihey will be Iaken care
ol and by whom.
Answer all Iheir quesIions. InviIe
Ihem Io Ialk more laIer.
Pre-Teens (1012 years old)
Flan lor a slighIly longer Ialk. LeI your children seI Ihe ace ol Ihe Ialk.
Eind ouI whaI your children already know abouI cancer. Make sure IhaI whaI
Ihey have heard alies Io your loved ones siIuaIion. Il noI, give Ihem Ihe
righI inlormaIion.
Be aware IhaI your children may ignore or avoid Ioics when Ihey are alraid.
29
Use simle, concreIe inlormaIion. Eor examle, you could exlain IhaI Ihere is a lum
in your loved ones body IhaI needs Io be removed.
Talk noI only abouI now, buI also
abouI Ihe luIure. Eor examle,
Iell Ihem how Ihe cancer may
allecI your lamily aI holidays or
ucoming evenIs.
Tell your children you will
do your besI Io answer Iheir
quesIions. LeI Ihem know youre
Ihere Io Ialk whenever Ihey wanI.
Teens (1318 years old)
You may be able Io have a longer Ialk. LeI your Ieens seI Ihe ace.
Be reared il your Ieens Iry Io ignore or avoid Ioics. Teens may acI Ihis way because
Iheyre alraid or even embarrassed. They may noI wanI Io Ialk abouI your loved ones
body. This may be esecially Irue il your loved ones cancer is in Ihe breasI or sex organs.
Teens olIen need Iime Io Ihemselves Io deal wiIh Iheir leelings. They may wanI Io be
alone or wiIh lriends. Give Ihem Ihis Iime.
Teens should be Iold Ihe lacIs abouI Ihe cancer. This can hel you correcI any wrong
inlormaIion IhaI Ihey may have. Give your Ieens bookleIs or websiIes Io read laIer.
They may wanI Io do Iheir own research. Il so, make sure IhaI whaI Ihey learn is lrom
a reliable source and alies Io your loved ones siIuaIion.
OlIen Ieens ask many "whaI il"
quesIions. They may wanI Io know more
abouI Ihe luIure. Again, answer Iheir
quesIions as besI you can. And leI Ihem
know youll be glad Io Ialk again laIer.
Teens may also wanI Io know how Ihe
cancer will allecI Ihem. Will iI disruI
Iheir social lile7 Will Ihey have Io do
more chores7 This is normal. Be honesI
wiIh Ihem.
30
Communicating with Your Partner with Cancer
Some relaIionshis geI sIronger during cancer IreaImenI.
OIhers are weakened. Nearly all caregivers and Iheir
arIners leel more sIress Ihan usual as a coule. They
olIen leel sIress abouI:
Knowing how Io besI suorI each oIher
Dealing wiIh new leelings IhaI come u
Eiguring ouI how Io communicaIe
Making decisions
Changing roles
Juggling loIs ol roles (such as child care, housekeeing, work, and caregiving)
Changing Iheir social lile
Changing Iheir daily rouIine
NoI leeling connecIed sexually
trg tc qvc wg
lusunrd twc tc tlrk
tlrqs tlrcuql. Nct
tc uc sc quck tc trg
nrd hx cvcrgtlrq.'
-Pnulrc
Feole exress Iheir emoIions dillerenIly. Some like Io Ialk Ihings ouI or locus on oIhers. And
some reler Io exress emoIions by doing Ihings, such as washing Ihe dishes or lixing Ihings
around Ihe house. They may be more likely Io locus inward. These dillerences can cause Iension
because each erson may execI Ihe oIher Io acI Ihe way Ihey would in Iheir lace. To reduce
sIress, iI may hel Io remind yoursell IhaI everyone reacIs dillerenIly.
Bringing Up Hard Topics with Your Loved One
Bringing u Iough subjecIs is emoIionally draining. You may Ihink, lor examle, IhaI your
loved one needs Io Iry a dillerenI IreaImenI or docIor. Or she may be worrying abouI losing
indeendence, being seen as weak, or abouI being a burden Io you, buI doesnI wanI Io Ialk
abouI iI. Here are some Iis on how Io bring u hard Ioics:
FracIice whaI youll say in advance.
Know IhaI your loved one may noI wanI Io hear whaI you have Io say.
Eind a quieI Iime and ask il iIs okay Io Ialk.
Be clear on whaI your aims are. (LeI your loved one know why you are having Ihis Ialk and
whaI you hoe will come lrom iI.)
Seak lrom your hearI.
Allow Iime lor your loved one Io Ialk. LisIen and Iry noI Io inIerruI.
DonI leel Ihe need Io seIIle Ihings in one Ialk.
You donI have Io always say, "IIll be okay."
31
Sometimes the best way to communicate with someone is to just listen. This is a way ol
showing IhaI you are Ihere lor Ihem. II may be one ol Ihe mosI valuable Ihings you can do.
And iIs imorIanI Io be suorIive Io whaIever your loved one wanIs Io say. IIs her lile and her
cancer. Feole need Io rocess Iheir IhoughIs and lears in Iheir own Iime and in Iheir own way.
You could also ask wheIher she is willing Io Ihink abouI Ihe issue and Ialk anoIher Iime. Your
loved one may even reler Io Ialk wiIh someone else abouI Ihe Ioic.
Some eole wonI sIarI a conversaIion Ihemselves, buI may resond il you begin lirsI. Here are
some ways caregivers do Ihis:
"I know Ihis is hard Io Ialk abouI, buI know IhaI Im ready Io lisIen or Io Ialk any Iime."
"I leel IhaI iI would be hellul Io Ialk abouI how your IreaImenI is going so lar and how
were boIh coing wiIh iI. Would you be willing Io Ialk wiIh me abouI IhaI someIime
Ihis week7"
SomeIimes iI hels Io ask oIher caregivers how Ihey Ialk Io Iheir loved one wiIh cancer, or oIhers
close Io Ihem. Eor examle, you may wanI Io ask:
How do you kee anoIher ersons leelings in mind when youre coing wiIh so many
leelings ol your own7
How do you Ialk abouI Iough Ioics and sIill sIay suorIive7
Il you conIinue Io have Irouble Ialking abouI Ihe cancer and ainlul issues, you could ask lor
rolessional advice. A menIal healIh exerI may be able Io hel you exlore issues IhaI you donI
leel you can yourselves. BuI il your loved one doesnI wanI Io go wiIh you, you can always make
an aoinImenI Io go by yoursell. You may ick u some ideas lor how Io bring u Ihese Ioics,
and Ialk abouI oIher leelings IhaI you are coing wiIh righI now.
Ways to Improve Communication
Some coules lind iI easier Io Ialk abouI serious issues Ihan oIher coules. Only you and your
arIner know how you communicaIe. The secIions below may hel you Ihink abouI ways Io
address sensiIive issues IhaI work lor boIh ol you.
Be Open About Stress
Some Ihings IhaI cause sIress lor you and your arIner
canI be solved righI now. SomeIimes Ialking abouI
Ihese Ihings can be hellul. You may wanI Io say u
lronI, "I know we canI solve Ihis Ioday. BuI Id like Io
jusI Ialk abouI how iIs going and how were leeling."
'vc rctccd tlnt wg
lusunrd trcs tc stng
rcnllg pcstvc vtl
cvcrgcrc clsc, cvcr ls
pnrcrts. Hc'll sng lc's
lcclrq nrd dcrq qrcnt.
1ls s lrustrntrq lcr
wc uccnusc nt lcwc,
scc tlnt lc sr't.'
-Ewlg
32
Toics Io exlore may include how each ol you:
Deals wiIh change and Ihe unknown
Eeels abouI being a caregiver or being cared lor
Handles changing roles in your relaIionshi
or home
WanIs Io connecI wiIh one anoIher
Sees whaI issues may be sIraining Ihe relaIionshi
Eeels, or would like Io leel, cared lor and
areciaIed
Eeels Ihanklul lor Ihe oIher erson
lccl lkc t's uccr sucl n
ulcssrq tc uc nulc tc slcv
wg lusunrd vng ucgcrd
vcrds lcv wucl lcvc lw.
Ard tc scc lw hqltrq
cnrccr uccnusc cl ls lcvc
lcr ls llc. t's n prvlcqc
tc uc sc clcsclg rvclvcd r
scwctlrq cl sucl vnluc nrd
wpcrtnrcc.' -Rcsc /nrg
Become a Team
You and your arIner may need Io be a Ieam now more Ihan ever. II may hel Io Ihink Ihings
Ihrough IogeIher:
Which decisions should you make IogeIher7
Which decisions should each ol you make alone7
WhaI were some oIher Iough Iimes IhaI you goI Ihrough IogeIher7 How is Ihis siIuaIion
similar or dillerenI7
Which lamily Iasks could you share7
WhaI kinds ol Iasks are easier lor you7 Which ones are harder7
WhaI does each ol you need7
How can oIhers hel7
Find Ways to Say Tanks
Ferhas your arIner used Io do a loI Io kee
your lamily going. And now, because hes
sick, youre Irying Io geI used Io less hel. II
may be hard Io noIice Ihe small Ihings your
arIner is sIill doing Io hel ouI. Theres olIen
Ioo much going on. BuI when you can, Iry Io
look lor Ihese Ihings, and Ihank your arIner
lor doing Ihem. Showing a liIIle graIiIude can
make boIh ol you leel beIIer.
33
Make Dates
Many coules lind IhaI iI hels Io lan secial occasions. Some days may end u being beIIer
Ihan oIhers lor Ihese daIes, deending on how your arIner leels. So you may need Io be okay
wiIh lasI-minuIe changes.
Your daIes donI have Io be lancy. IIs abouI sending Iime IogeIher. ThaI can mean waIching a
video, going ouI Io eaI, or looking Ihrough old hoIos. II can be whaIever you boIh like Io do.
You can also lan Ihese daIes Io include oIher eole, il you miss being around oIhers.
Find Ways to Be Intimate
You may lind IhaI you and your arIner s sex lile is dillerenI Ihan iI used Io be. Many Ihings
could be allecIing iI:
Your arIner is Iired, in ain, or uncomlorIable.
Youre Iired.
Your relaIionshi leels disIanI or sIrained.
You or your arIner may noI be comlorIable wiIh Ihe
way your arIner looks due Io IreaImenI.
You may be alraid ol hurIing your arIner.
Your arIners IreaImenI mighI be allecIing his or her inIeresI in sex or abiliIy Io erlorm.
Altcr 42 gcnrs cl
wnrrnqc, tlcrc's tlnt
ucrd tlnt dccsr't rccd
vcrds.' -Gccrqc
You can sIill have an inIimaIe relaIionshi in siIe ol Ihese issues. InIimacy isnI jusI hysical. II
also involves leelings. Here are some ways Io imrove your inIimaIe relaIionshi:
Talk about it. Choose a Iime when you and your arIner can Ialk. Eocus on jusI Ialking. Talk
abouI how you can boIh renew your connecIion.
Try not to judge. Il your arIner isnI erlorming, Iry noI Io read meaning inIo iI. LeI your
arIner Ialkor noI IalkabouI whaI he or she needs.
Make space. FroIecI your Iime IogeIher. Turn oll Ihe hone and TV. Il needed, lind someone
Io Iake care ol Ihe kids lor a lew hours.
Take it slow. ReconnecI. Flan an hour or so Io be IogeIher wiIhouI being hysical. Eor
examle, you may wanI Io lisIen Io music or Iake a walk. This Iime is abouI reconnecIing.
Try new touch. Cancer IreaImenI or surgery can change your arIners body. Areas where
Iouch used Io leel good may now be numb or ainlul. Some ol Ihese changes will go away.
Some will sIay. Eor now, you can ligure ouI IogeIher whaI kinds ol Iouch leel good, such as
holding, hugging, and cuddling.
Talk to a therapist or counselor. There are many who deal wiIh inIimacy and sexualiIy
issues wiIh cancer aIienIs.
34
Communication
Troubles
Studies show that open and
caring communication works
best. Yet caregivers often
run into:
Tension from dierent ways
of communicating
Lack of sensitivity or
understanding about
appropriate ways to talk
and share feelings
People who dont know
what to say, wont
communicate at all, or
wont be honest
Communicating with Other
Family Members and Friends
Any roblems your lamily may have had belore Ihe
cancer diagnosis are likely Io be more inIense now. This
is Irue wheIher youre caring lor a young child, an adulI
child, a arenI, or a souse. Your caregiver role can olIen
Irigger leelings and role changes IhaI allecI your lamily in
ways you never execIed. And relaIives you donI know
very well or who live lar away may be resenI more olIen,
Ioo, which may comlicaIe Ihings. Some eole have
said IhaI:
Seeing your adulI child ill can Irigger leelings ol
needing Io roIecI or hel him or her.
vntclrq wg dnuqltcr qc tlrcuql cnrccr s rcnllg
pnrlul lcr wc. cnr't stnrd rct ucrq nulc tc lclp
lcr. But tlcg vcr't lct wc lclp cut. 5lc nrd lcr
lusunrd lkc tc lnrdlc tlrqs ug tlcwsclvcs.'
Seeing your arenI as someone who needs your hel
can be hard Io acceI.
/g wctlcr qct cnrccr. Just lkc slc rurscd wc
unck tc lcnltl ns n clld, vnrtcd tc dc tlc snwc
lcr lcr. Yct slc's uscd tc dcrq cvcrgtlrq lcrscll.
5lc kccps sngrq, 'w stll gcur wctlcr.''
lnvc wg cvr llc, vtl gcurq kds tc tnkc cnrc
cl, nrd n cu. t's lnrd trgrq tc hqurc cut lcv tc
lclp wg dnd.'
Seeing an in-law or a lriends arenI worry or Iry Io
hel ouI can leel like "Ioo much."
rccd tc rur wg cvr lcwc. krcv ls wctlcr
ust vnrts tc lclp, uut slc's tcc wucl r wg
uusrcss rqlt rcv.'
35
Hold a Family Meeting
SomeIimes oIher close lamily and lriends may noI
agree on whaI should be done. IIs very common
lor lamilies Io argue over IreaImenI oIions. Or
Ihey argue because some caregivers hel more
Ihan oIhers. While everyone may be Irying Io do
whaI Ihey Ihink is besI lor your loved one, lamily
members may disagree abouI whaI Ihis means.
Everyone brings Iheir own seI ol beliels and values
Io Ihe Iable, which makes decisions hard. II is olIen
during Ihese Iimes IhaI lamilies ask Iheir healIh care
Ieam Io hold a lamily meeIing.
Ycu dc vnrt tc stng
pcstvc nrd upucnt. But
nt tlc snwc twc, lccl
lkc gcu vnrt tc slnrc
gcur rcnltg vtl ctlcr
pccplc r gcur lnwlg sc
tlnt tlcg cnr krcv lcv
tc suppcrt gcu nrd lcv
rct tc uc slcckcd l tlrqs
qct vcrsc.'-/ngn
Talk wiIh your loved one Io see il she wanIs a lamily
meeIing. Ask il she would like Io be involved. AI Ihe
meeIing, all members share as much inlormaIion as
Ihey can. You can ask a social worker or counselor Io be Ihere, il needed. Il you need Io, you can
bring a lisI ol issues Io discuss. MeeIings can be used Io:
Have Ihe healIh care Ieam exlain Ihe goals lor IreaImenI
LeI Ihe lamily sIaIe Iheir wishes lor care
Give everyone an oen lorum in which Io exress Iheir leelings
Clarily caregiving Iasks
During Ihese meeIings, lamily members may wanI Io Ialk abouI how Ihey leel. Or Ihey may wanI
Io Ialk abouI whaI kind ol hel Ihey can give Io Ihe aIienI. Each erson may have cerIain skills
Io oller.
AI Ihe end ol Ihe meeIing, ask Ihe healIh care Ieam Io summarize and hel lan Ihe nexI sIes.
Choose the Right Time
SomeIimes when one erson leels like Ialking abouI imorIanI Ihings, Ihe oIher erson doesnI.
Try choosing a Iime when you and Ihe erson you wanI Io Ialk Io wonI be doing oIher Ihings.
Eind a quieI lace, Iurn oll Ihe TV, and donI answer Ihe hone.
Keep People Updated
OlIen, you will be Ihe main erson udaIing lamily, lriends, and coworkers abouI how Ihe
aIienI is doing. Ask your loved one whaI he wanIs Io share, wiIh whom, and when. Il Ihis is a
Iask IhaI someone else can do, selecI a "oinI erson." This erson can make hone calls or send
email or leIIers Io udaIe oIhers. Or il youve creaIed a websiIe Io kee oIhers inlormed abouI
your loved one, Ihey can udaIe IhaI as well. IIs imorIanI Io leI oIhers who care know wheIher
your loved one likes geIIing cards, calls, or visiIs.
36
How to Communicate When Support Isnt Useful
Il eole oller hel IhaI you donI need or wanI, Ihank Ihem lor Iheir concern. LeI Ihem know
youll conIacI Ihem il you need anyIhing. You can Iell Ihem IhaI iI always hels Io send cards
and leIIers. Or Ihey can ray or send good IhoughIs.
SomeIimes eole oller unwanIed advice on arenIing, medical care, or any number ol issues. II
can be unleasanI Io hear such commenIs. Eor examle, some caregivers have shared:
"We have a roblem wiIh a member ol my husbands lamily. She doesnI live here and
kees quesIioning all our decisions. IIs goIIen so bad IhaI weve had our docIor exlain
Io her IhaI shes noI here all day, and, Iherelore, doesnI undersIand Ihe siIuaIion. She has
been a real ain."
"I leel like eole really wanI him Io do Ihe IreaImenI Ihey are suggesIing, raIher Ihan
whaI we leel is besI. IIs making Ihis harder Ihan iI needs Io be."
Feole olIen oller unwanIed advice because Ihey arenI sure whaI else Ihey can do. They may leel
helless Io do anyIhing, yeI wanI Io show Iheir concern. While iI may come lrom a good lace,
iI can sIill seem judgmenIal Io you.
IIs your decision on how Io deal wiIh Ihese
oinions. You donI have Io resond aI all il you
donI wanI Io. Il someone has concerns abouI your
kids IhaI seem valid, Ialk Io a counselor or Ieacher
abouI whaI sIes Io Iake. Or il Ihe concerns are
abouI your loved one, you can Ialk Io Ihe medical
Ieam. OIherwise, Ihank Ihem. And reassure Ihem
IhaI you are Iaking Ihe necessary sIes Io geI your
loved one and lamily Ihrough Ihis Iough Iime.
/g wctlcr cnwc ug
nrd ccwwcrtcd cr lcv
wucl tclcvscr tlc kds
vcrc vntclrq. 5lc wndc
scwc rcwnrk nucut lcv
slc krcv vns strcsscd,
uut cculd hrd scwctlrq
ucttcr lcr tlcw tc dc?
tcld lcr 'vc qct n lct cr
wg wrd, nrd rccdcd
lcr urdcrstnrdrq.'
-Cnrrc
37
Life Planning
IIs common Io leel sad, angry, or worried IhaI your lilesIyle may change because ol your loved
ones cancer. You may have Io make major decisions IhaI will allecI your job or your linances.
Einding ways Io coe wiIh Ihese issues can bring some eace ol mind.
Facing Fertility Issues
Some eole are concerned abouI Ihe ellecIs ol cancer IreaImenI on Iheir abiliIy Io have
children. Il Ihis is Irue lor you and your loved one, Ialk Io Ihe docIor belore sIarIing IreaImenI.
You may wanI Io ask abouI oIions lor roIecIing your lerIiliIy. Or Ihe docIor can recommend a
counselor or lerIiliIy secialisI. This erson can discuss available oIions and hel you and your
loved one make inlormed choices. (Eor more inlormaIion, call EerIile Hoe aI 1-888-4-HOFE,
or go Io hII:}}www.lerIilehoe.org.)
Handling Money Worries
The linancial challenges IhaI eole wiIh cancer and Iheir lamilies lace are ve y real. During
an illness, you may lind iI s hard Io have enough Iime or energy Io review your oIions. YeI iIs
imorIanI Io kee your lamily linancially healIh .
Eor hosiIal bills, you or your loved one may wanI Io Ialk wiIh a hosiIal linancial counselo . You
may be able Io work ouI a monIhly aymenI lan or even geI a reduced raIe. You also should sIay
in Iouch wiIh Ihe insurance comany Io make sure cerIain IreaImenI cosIs are covered.
'w rct vcrkrq lcr tlc
wcrcg. 'w vcrkrq lcr
tlc ucrchts. l vc dcr't
lnvc ucrchts, vc cculd
lcsc cvcrgtlrq.' -Pllp
Eor inlormaIion abouI resources IhaI are available, see Ihe Resources secIion on age 42. ces secIion
You can also go direcIly Io Ihe NCI websiIe,
www.cancer.gov, and access Ihe daIabase,
NaIional OrganizaIions IhaI oller SuorI
Services (search Ierms "NaIional OrganizaIions").
Or call Ioll-lree 1-800-4-CANCER (1-800-422-
o237) Io ask lor hel.
38
Handling Work Issues
One ol Ihe greaIesI sources ol sIrain lor some caregivers is
Irying Io balance work demands wiIh roviding care and
suorI Io a loved one. Caregiving can have ellecIs on
your work lile in many ways, such as Ihese:
Causing mood swings IhaI leave coworkers conlused
or relucIanI Io work wiIh you
Making you disIracIed or less roducIive
Causing you Io be laIe or call in sick because
ol Ihe sIress
CreaIing ressure lrom being Ihe sole rovider lor your lamily il your souse or arIner
is noI able Io work
CreaIing ressure Io kee working, even Ihough reIiremenI may have been aroaching
A lct cl twcs ccwc
lcwc lrcw ucrq nt tlc
lcsptnl vtl rc slccp
nrd tlcr lnvc tc qc tc
vcrk tlc rcxt wcrrrq.
t's vcrg trrq.' -Bctsg
IIs a good idea Io learn more abouI your comanys rules and olicies relaIed Io a lamily
members illness. See il Ihere are any suorI rograms lor emloyees. Many comanies have
emloyee assisIance rograms wiIh work-lile counselors lor you Io Ialk Io. Some comanies have
eldercare olicies or oIher emloyee beneliI rograms IhaI can hel suorI you. our emloyer
may leI you use your aid sick leave Io Iake care ol your loved one. Or Ihey may leI you Iake
leave wiIhouI ay.
Il your emloyer doesnI have any olicies in lace, you could Iry Io arrange someIhing
inlormally. Examles include llex-Iime, shilI-exchanging, adjusIing your schedule, or
IelecommuIing as needed.
The Eamily and Medical Leave AcI may aly Io your siIuaIion. Covered emloyers musI give
eligible emloyees u Io 12 work weeks ol unaid leave during a 12-monIh eriod Io care lor
an immediaIe lamily member wiIh a serious healIh condiIion. VisiI Ihe U.S. DearImenI ol Labor
websiIe aI hII:}}www.dol.gov}esa}whd}lmla lor more inlormaIion. Eor sources ol suorI, see
Ihe Resources secIion on age 42.
Looking at Living Arrangements
SomeIimes IreaImenI raises quesIions abouI living arrangemenIs. When making Ihese decisions,
you should ask:
WhaI kind ol hel does your loved one need, and lor how long7
Could you remodel Ihe house or move Io a smaller or dillerenI one7
Is iI risky lor your loved one Io be home alone7
39
Youll also need Io consider how your loved one
leels. She may lear:
Losing her indeendence
Being seen as weak or a burden Io you
and oIhers
Moving Io a healIh care or oIher Iye ol
assisIed living laciliIy
These are Iough issues. SomeIimes iIs easier Io
consider a change in living arrangemenIs when
Ihe advice comes lrom a healIh care rolessional.
Social workers, docIors, nurses, home care
roviders, and agencies IhaI work wiIh older
adulIs may be able Io hel you Ialk Io your
loved one.
Preparing Advance Directives
Il you have noI done so already, iIs imorIanI Io
sIarI Ialking wiIh your loved one abouI advance
direcIives. Advance direcIives are legal aers
IhaI Iell Ihe docIors whaI Io do il your loved one
canI Iell Ihem himsell. The aers leI Ihe aIienI
decide ahead ol Iime how he wanIs Io be IreaIed,
sIaIing his wishes lor care. These decisions can
seem overwhelming. BuI aIienIs should kee
in mind IhaI avoiding Ihese decisions when
Ihey are well will only lace a heavier burden on
Ihem and Iheir loved ones laIer on. Even il your
loved one has a good rognosis, he should lill ouI
advance direcIives. These may include a living
will and a durable ower ol aIIorney.
/g lusunrd nrd snt dcvr
tcqctlcr ns lc hllcd cut ls lvrq
vll. vc wndc surc vc vcrc r
nqrccwcrt vtl crc nrctlcr. t
rclcvcs wc cl n lct cl qult cculd
lnvc lnd.' -Alwn
Legal Papers
At-A-Glance
Advance directives:
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 cant make
them. Tis person, chosen by
the patient, is called a health
care proxy.
Other legal papers that are not
part of the advance directives:
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.)
Power of attorney appoints
a person to make nancial
decisions for the patient when
he or she cant make them.
Note: A lawyer does not always
need to be present when you
ll out these papers. However, a
notary public may be needed.
Each state has its own laws about
advance directives. Check with a
lawyer or social worker about the
laws in your state. (For more, see
the Resources on page 42.)
40
Reection
As a caregiver, you Iry Io sIrike a balance each day. You have Io care lor your loved one while
keeing u wiIh Ihe demands ol lamily and work. Your locus Iends Io be on Ihe aIienIs needs.
BuI iIs also u Io you Io Iry Io sIay in Iune wiIh yoursell. Remember Ihe Ihings you need Io
mainIain a healIhy mind, body, and siriI. And, il you can, Iry Io lind a quieI Iime lor rellecIio
each day. MediIaIing, raying, or jusI resIing may hel you kee a sense ol eace aI Ihis Iime.
WheIher good or bad, lile-changing siIuaIions olIen give eole Ihe chance Io grow, learn, and
areciaIe whaIs imorIanI Io Ihem. Many eole who care lor someone wiIh cancer describe
Ihe exerience as a ersonal journey. They say iI has changed Ihem lorever. This is much like Ihe
way eole wiIh cancer describe Iheir exerience. IIs noI necessarily a journey IhaI caregivers
would have chosen lor Ihemselves. BuI Ihey can use Iheir skills, sIrengIh, and IalenIs Io suorI
Iheir loved one while linding ouI more abouI Ihemselves along Ihe wa .
l gcu hrd t r gcur lcnrt
tc cnrc lcr scwcucdg clsc,
gcu vll lnvc succccdcd.'
-/ngn Arqclcu
41 41
Caregivers Bill of Rights
I have the right to take care of myself. Tis is not
an act of selshness. 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 if
he was 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 dicult 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
doesnt matter if she knows they are doing it or not.)
I have the right to get considerations, aection,
forgiveness, and acceptance for what I do for my
loved one, as I oer these in return.
I have the right to take pride in what Im 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 when my
loved one no longer needs my full-time help.
(Aurnor unknown)
42
Resources
For more resources:
See |ar|ona| Crgan|zar|ons 1ar Cqer
cancer-ke|ared :er.|ces at http://www.cancer.gov.
In the search box, type in the words national
organizations.
Or call 1-800-4-CANCER (1-800-422-6237)
to seek more help.
Cancer Information
and Support
Federal Resources
National Cancer Institute
Provides current information on cancer prevention, screening, diagnosis, treatment,
genetics, and supportive care.
Visit ..................http://www.cancer.gov
Cancer Information Service
Answers questions about cancer, clinical trials, and cancer-related services and helps
users nd information on the NCI website. Provides NCI printed materials.
Toll-free ................... 1-800-4-CANCER (1-800-422-6237)
Visit ............................ http://www.cancer.gov/aboutnci/cis
Chat online ........... Click on LiveHelp from the home page.
Administration on Aging
Provides information, assistance, individual counseling, organization of support groups,
caregiver training, respite care, and supplemental services.
Phone ..............1-202-619-0724
Visit ..................http://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.
Toll-free .........1-800-MEDICARE (1-800-633-4227)
Visit ..................http://www.medicare.gov (for Medicare information) or
http://www.cms.hhs.gov (other information)
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.
Toll-free .........1-800-669-4000
TTY ...................1-800-669-6820
Visit ..................http://www.eeoc.gov
National Association of Area Agencies on Aging
Eldercare Locator
Te Eldercare Locator is a nationwide directory assistance service designed to help
older persons and caregivers nd local resources for support. Areas of support include
transportation, meals, home care, housing alternatives, legal issues, and social activities.
Toll-free .........1-800-677-1116
Visit ..................http://www.eldercare.gov
U.S. Department of Labor
Oce of Disability Employment Policy
Provides fact sheets on a variety of disability issues, including discrimination, workplace
accommodation, and legal rights.
Toll-free .........1-866-ODEP-DOL (1-866-633-7365)
TTY ...................1-877-889-5627
Visit ..................http://www.dol.gov/odep
Non-Prot Organizations
American Cancer Society (ACS)
Mission is to end cancer as a major health problem through prevention, saving lives, and
relieving suering. ACS works toward these goals through research, education, advocacy,
and service. Te organizations National Cancer Information Center answers questions 24
hours a day, 7 days a week.
Toll-free .........1-800-ACS-2345 (1-800-227-2345)
TTY ...................1-866-228-4327
Visit ..................http://www.cancer.org
American Pain Foundation
Serves people with pain through information, advocacy, and support; pain and resource
information, practical help and publications are available through toll-free telephone service
and website.
Toll-free .........1-888-615-PAIN (1-888-615-7246)
Visit ..................http://www.painfoundation.org
CancerCare
Oers free support, information, nancial assistance, and practical help to people with
cancer and their loved ones.
Toll-free .........1-800-813-HOPE (1-800-813-4673)
Visit ..................http://www.cancercare.org
Cancer Support Community
Te CSC is dedicated to providing support, education, and hope to people aected
by cancer.
Toll-free ........1-888-793-9355
website ...........http://www.cancersupportcommunity.org
43
Fertile Hope
Fertile Hope provides reproductive information, support, and hope to cancer patients who
are at risk for treatment-related infertility.
Toll-free .........1-888-794-HOPE (4673)
Visit ..................http://www.fertilehope.org
L|vesttong
Llvestrong seeks to inspire and empower people living with, through, and beyond cancer to
live strong. It provides education, advocacy, and public health and research programs.
Phone ..............1-512-236-8820 (general number)
Toll-free .........1-866-235-7205 (LIVESTRONG SurvivorCare program)
Visit ..................http://www.livestrong.org
NeedyMeds
Lists medicine assistance programs available from drug companies.
NOTE: Usually patients cannot apply directly to these programs. Ask your doctor, nurse, or
social worker to contact them.
Visit ..................http://www.needymeds.com
National Coalition for Cancer Survivorship (NCCS)
Gives out information on cancer support, employment, nancial and legal issues, advocacy,
and related issues.
Toll-free .........1-877-NCCS-YES (1-877-622-7937)
Visit ..................http://www.canceradvocacy.org
Patient Advocate Foundation
Oers education, legal counseling, and referrals concerning managed care, insurance,
nancial issues, job discrimination, and debt crisis matters.
Toll-free .........1-800-532-5274
Visit ..................http://www.patientadvocate.org
Te Well Spouse Foundation
Te foundation provides support to wives, husbands, and partners of chronically ill and/or
disabled persons.
Toll-free .........1-800-838-0879
Visit ..................http://www.wellspouse.org
44
NIH Publication No. 14-5726
Revised May 2014
NIh...Iuroiog iscovery Ioto heaIth