Family, Partner and Caregiver Issues
Trouble is a part of life,
and if you don’t share it, you won’t
give the person who loves you a chance to
love you enough.
— Dinah Shore
When talking about breast cancer,
attention is usually focused on the needs
of the patient. From the time of diagnosis,
through treatment and beyond, these needs
change. The same is true for the people who
love and care for the breast cancer patient.
While the breast cancer patient is the one
who deals most directly with the disease,
it is important to remember that a diagnosis
of breast cancer has a powerful impact on
everyone who loves and cares for the patient.
It has the potential to change the dynamics
of many relationships. Sometimes these changes
are for the better, sometimes not.
loved one is facing breast cancer, it is
important that she know you are there for
her whenever she needs you, and that she
is not alone in the fight. It is helpful
for you to recognize and try to understand
what she may be feeling. It is just as
important for you to keep the lines of communication
open. Be supportive, and ask her what she
needs from you. Each person and every family
is different in how they deal with difficult
times. Quite often, these challenges bring
the family (and friends) closer together.
can I provide emotional support?
Spend time together, and offer flexibility
and attentiveness. There does not need
to be a reason to get together, or a
list of tasks to accomplish. Watching television
or a movie together can be very satisfying.
emotional space for the woman with breast
cancer to work through her feelings at
her own pace, and in her own way. Everyone
Ask directly, and be prepared to hear,
what she wants and needs. It is also important
to find out what she does not want.
with the punches. Avoid taking things personally.
Mood swings, and rapidly changing approaches
to the illness, daily tasks, or friends
and family, are not unusual.
to “fix” every
problem. There are no easy answers to a
cancer diagnosis, and sometimes people need
to just know that they are being listened
Be reassuring and open about
offering continued support.
ahead of time and be on time. If you can’t
make an appointment, call immediately.
you can, and avoid promising too much. If you are unable to
do what you have promised, don’t let guilt get
in the way of offering support or helping
out in other ways. A common mistake is
not getting back in touch because of personal
embarrassment. An unexplained absence is
worse than calling to offer different help.
Give yourself a break. Everyone
is trying their best, and learning
as they go. Caregivers are no exception.
Above adapted from
Tips for Caregivers from the National
Alliance of Breast Cancer Organizations’ Breast
Cancer Resource List (2003-2004).
it is important for you to be supportive
of your friend or loved one, remember
that you also have needs
which require attention.
In order to be a good caregiver,
you need to take good care
of yourself (physically,
emotionally and spiritually).
It is very easy to become
so overwhelmed by the situation
that you find yourself operating
on “auto-pilot.” You
may not even recognize
that you are approaching burnout. When you reach this point, it
may become difficult to be a supportive caregiver
for your loved one.
can caregivers take care of themselves?
Try to find someone to talk with
about your own feelings. Sometimes
there are support groups in your
area specifically for family members,
friends or partners. See our listing
Groups in North Carolina or check
with your local hospital or cancer
other caregivers. They can offer support
and information about how they handle being
the caregiver in their family.
suppress your emotions. It is okay to cry when you
need to. Acknowledge your own fears
and feelings as a normal response,
not a weakness, and find ways to
deal with them.
Take some time to relax or
exercise or spend time with your friends.
to recharge your batteries. Continue
to do whatever brings you peace, comfort
and happiness as you go through the process
of caring for your friend or loved one.
And remember to leave the guilt behind.
try to handle everything yourself. When
someone offers to help, let them lighten
your sense of humor. It can
help reduce tension
and uplift everyone,
especially in difficult
times, even if
only for a few
of resources available. Whether
you are an immediate family member or a
relative, friend or co-worker of the breast
cancer patient or survivor, your life will
be affected and changed by your experience
in dealing with and caring for her or
him. There are many resources
you can turn to for help. Sometimes the help
will come naturally from
within the relationships you have. Sometimes
it will come from strangers who are traveling
on similar paths. Other times,
you may need to turn to professionals
to help you cope with your own feelings
We hope the
resources we provide help you through
the challenge of knowing
and caring for a friend or
loved one who has breast cancer.
The Signs Of Burnout
- Irritability. You
snap at people for small things;
you lose patience easily.
- Withdrawal. You
don’t stay in touch with
friends or participate in previously
- Fatigue. You are
constantly tired and exhausted.
- Insomnia. You have
a hard time getting to sleep, staying
asleep, or sleep restlessly.
- Apathy. You feel
numb and must force yourself to
do routine caregiver tasks.
- Appetite Changes.
You eat more than you used to or
don’t feel like eating anything.
- Increased Substance
Use. The only relief you can get
is from alcohol, drugs or smoking.
- Feelings of Guilt.
You think you are not doing enough
or you feel resentment for the
amount of work you are doing.
Above Signs of Burnout
adapted from the American Cancer
Society, 800.ACS.2345 or www.cancer.org.
of Retired Persons (AARP)
North Carolina office (Raleigh, NC)
919.755.9757 or 877.434.7598 (TTY)
Provides free publications for caregivers
and those over age 50. Also has information
American Cancer Society (ACS)
800.ACS.2345 or 866.228.4327 (TTY)
Provides information and services for all
forms of cancer, including breast cancer,
diagnosis, treatment and many other topics.
Comprehensive caregiver information is available
through free booklets or online.
Buddy Kemp Caring House (Charlotte, NC)
Provides home-like environment for emotional
support away from the hospital setting. All
services are free. Offers support groups
for breast cancer, metastatic cancer, and
family and friends.
All services are free. Publishes, “A
Helping Hand,” a free resource guide
for people with cancer. Hotline available
for one-on-one support with trained social
workers. Caregiving information also available
Cornucopia House Cancer Support Center (Chapel
Offers free education, companionship and
support to people coping with cancer. Includes
support groups for patients, partners, family
members and children.
Provides free information about breast cancer
and becoming an effective support partner.
Family Caregiver Alliance
Provides information and resources to caregivers
to assist in care, planning, stress relief
and locating and using community resources.
Living Beyond Breast Cancer
(Survivor’s Helpline, Tuesdays 11:00
am - 3:00 pm)
Addresses post-treatment needs of women with
breast cancer through educational programs,
newsletter, helpline for survivors and family
Mautner Project for Lesbians With Cancer
Education, information, support and advocacy
for lesbians with cancer and their families
and caregivers. Offers a national Peer Support
Network to lesbians with cancer, their partners
Men Against Breast Cancer
Focus is on changing breast cancer from a
woman’s issue to a family issue. Provides
support services for men who have a partner
with breast cancer. Web site has a bulletin
board for online discussion.
Mothers Supporting Daughters with Breast
Support network of mothers who have daughters
with breast cancer to help mothers become
better “care partners.”
National Alliance for Caregiving
Provides support to family caregivers of
older persons. Web site has a family care
resource section, article and tips for caregivers
National Association of Hospital Hospitality
Helps provide family-centered lodging and
support services for people needing treatment
away from home and their families. Nine houses
located in North Carolina.
Cancer Information Service
This government organization is one of the
best resources for cancer patients. Has free
information for caregivers.
National Coalition for Cancer Survivorship
Advocacy group led by cancer survivors. Provides
free “Cancer Survival Toolbox.” Has
information on Caring for the Caregiver.
National Family Caregivers Association
Offers education, support and advocacy for
caregivers. Publishes a resource guide and
other educational materials, including “The
Resourceful Caregiver (Helping Family Caregivers
R.A. Bloch Cancer Foundation
816.WE.BUILD (816.932.8453) or 800.433.0464
Free information, resources and support groups.
Has a free book and guide (or view online): “Cancer–There’s
Hope and Guide for Cancer Supporters.”
Susan G. Komen Breast Cancer Foundation
Foundation for breast cancer research, education,
screening and treatment. Has a toll-free
helpline (above) and free booklets for caregivers.
Vital Options International Telesupport
Weekly call-in cancer radio show called “The
Group Room” links callers with other
patients, healthcare providers, long-term
survivors, and family members of patients
Well Spouse Foundation
Gives support to husbands, wives and partners
of the chronically ill and/or disabled. Provides
educational pamphlets and bimonthly newsletter.
Y-ME National Breast Cancer Organization
Offers Men’s Match program, which provides
support and education for men while they
are supporting a wife, mother, daughter or
friend through breast cancer, and free booklet
Books and More
Cancer Husband: How to Help Your Wife (and
Yourself) Through Diagnosis, Treatment, and Beyond, by Marc
Silver (2004). Silver, husband of a breast
cancer survivor, provides a realistic look
at what a man can do in the frantic early
days just after a wife’s
breast cancer diagnosis and throughout the
A Step-by-Step Resource for Caring for
the Person with Cancer at Home,
by Peter S. Houts, PhD and Julia A. Bucher,
RN, PhD (2000). Offers step-by-step instructions
on how to deal with situations that may occur
when giving care to a person with cancer;
also has a comprehensive resource list.
the Heart: A Family’s Encounter
with Breast Cancer, by Barry D. Teater (1997).
Written by the brother of a young woman diagnosed
with breast cancer about her diagnosis, treatment
and family support over seven years.
of Home: An Illustrated, Step-By-Step Guide
for Caregivers, by Maria M. Meyer with
Paula Derr, RN (2002). A well-designed book
with practical information for caregivers
and a resource listing for items to help
the Cow: A Young Family’s
Struggle With Breast Cancer, Loss and Rebuilding,
by Chris Donner (2000). Account of author’s
wife’s struggle with breast cancer
and the rebuilding process for him and his
four young children after her death.
“Family Support” (video,
2001). Shows several women, their family
and friends discussing support issues after
a breast cancer diagnosis. Contact WomenStories
at 800.775.5790 or www.womenstories.org.
“I Don’t Know What to Say .
. .”: How to Help and Support Someone
Who is Dying, by Robert Buckman (1992). Addresses
patients’ needs for information and
needs of family and friends; how to support
a dying loved one; and complications of caring
for people with terminal illness.
a Worried Man, by Brendan Halpin (2003). Written from the perspective of a
husband whose 32-year-old wife was diagnosed
with Stage IV breast cancer. Reviews the
struggles he went through.
Man: When the Woman You Love Has Breast
Cancer, by Andy
Murcia and Bob Stewart (1989). Written
by two men after their wives had breast
cancer. Explains how to become an informed
medical advocate for a wife’s
health and how to build a positive “life
plan” for the future.
in Hope, A Man’s Guide to
Women’s Breast Cancer (video). Looks
at breast cancer from a man’s point
of view. Couples and family counseling experts
share their challenges and offer advice.
Contact Bosom Buddies, 877.245.1300 or www.bosombuddies.org.
Laughter & Broccoli:
Being There When Your Wife Has Breast Cancer,
by Peter Flierl, MSW (2004). Author’s
wife is 21-year survivor of Stage III breast
cancer. Shares strength, faith, wisdom, courage
and common sense with other couples and families
battling breast cancer.
Care: How to Organize a Group for Someone
Who is Seriously Ill, by Cappy Capossela and Sheila
Warnock (1995). Explains how to form a caregiving
network and covers issues including how
to avoid caregiver burnout.
Talk About Breast Cancer From Diagnosis
to Recovery: A Guide for the Entire Family,
by Suzanne W. Braddock, MD, Jane M. Kercher,
MD, John J. Edney, MD and Melanie Morrissey
Clark (2002). A guide for the entire family
about breast cancer diagnosis, treatment
and reconstruction. Braddock is a breast
Survivor’s Guide to Breast Cancer:
A Couple’s Story of Faith, Hope and
Love, by Robert C. Fore, EdD and Rorie E.
Fore, RN (1998). A story about one couple’s
experience with breast cancer. Shows impact
that family, friends, co-workers and healthcare
providers had on their lives.
Sleep, by Elizabeth Berg (1997). A fictional account
of how a group of women face the diagnosis
of breast cancer in one of their friends.
A moving book about the strength of women’s
Joy, by Bobbi de Cordova-Hanks and Jerald
E. Hanks (2003).
The story of the co-authors’ cancer
journey from the perspective of a cancer
survivor and caregiver. Bobbi is Founder
of Bosom Buddies in Jacksonville, FL.
Today’s Caregiver. A
bimonthly magazine for family and professional
caregivers of all types. View back issue
articles on the web site (www.caregiver.com).
Woman You Love Has Breast Cancer,
by Larry T. Eiler (1996). Based on personal
experience, the book addresses issues faced
by a man whose wife or girlfriend has the
disease and suggests steps to take to be
Friend Gets Cancer: How You Can Help,
by Amy Harwell with Kristine Tomasik (2000).
Gives concrete suggestions; ways to help
in the first days, through the middle of
the illness, and through remission or the
final days. Has a Christian focus.
Association of Cancer
Online Resources (ACOR)
Hosts public online support groups. Click
on “Mailing Lists” to see
a listing. Groups include:
(partners of breast cancer patients)
(family/caregivers of cancer patients)
(family/caregivers of patients suffering
from cancer pain)
- FACING-AHEAD (people
facing the death of a loved one)
Full Circle of Care
A web site for family caregivers, geared
toward seniors in North Carolina (but applicable
to other states). Offers information, resources
and opportunity to talk or email with a Caregiver
Specialist. Also available in Spanish.
Oncolink: Information for Caregivers
Can subscribe to a caregiver or hospice list.
The site has personal stories and links to