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.

If your 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.

How 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.

Provide emotional space for the woman with breast cancer to work through her feelings at her own pace, and in her own way. Everyone copes differently.

Practice good listening. Ask directly, and be prepared to hear, what she wants and needs. It is also important to find out what she does not want.

Roll 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.

Try not 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 to.

Be reassuring and open about offering continued support.

Plan visits ahead of time and be on time. If you can’t make an appointment, call immediately.

Do what 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).

While 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.

How 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 of Support Groups in North Carolina or check with your local hospital or cancer center.

Talk to other caregivers. They can offer support and information about how they handle being the caregiver in their family.

Do not 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.

Take time 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.

Don’t try to handle everything yourself. When someone offers to help, let them lighten your load.

Keep your sense of humor. It can help reduce tension and uplift everyone, especially in difficult times, even if only for a few moments.

Take advantage 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 and emotions.

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.

RESOURCES

Organizations

American Association of Retired Persons (AARP)
800.424.3410
www.aarp.org
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 in Spanish.

American Cancer Society (ACS)
800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
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)
704.384.5223
www.novanthealth.org/buddykemp
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.

CancerCare
800.813.HOPE (800.813.4673)
www.cancercare.org
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 in Spanish.

Cornucopia House Cancer Support Center (Chapel Hill, NC)
919.401.9333
www.cornucopiahouse.org
Offers free education, companionship and support to people coping with cancer. Includes support groups for patients, partners, family members and children.

EduCare, Inc.
803.796.6100
www.educareinc.com
Provides free information about breast cancer and becoming an effective support partner.

Family Caregiver Alliance
415.434.3388
www.caregiver.org
Provides information and resources to caregivers to assist in care, planning, stress relief and locating and using community resources.

Living Beyond Breast Cancer
888.753.LBBC (888.753.5222)
(Survivor’s Helpline, Tuesdays 11:00 am - 3:00 pm)
www.lbbc.org
Addresses post-treatment needs of women with breast cancer through educational programs, newsletter, helpline for survivors and family members.

Mautner Project for Lesbians With Cancer
202.332.5536
www.mautner project.org
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 and family.

Men Against Breast Cancer
866.547.MABC (866.547.6222)
www.menagainstbreastcancer.org
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 Cancer
410.778.1982
http://mothersdaughters.org
Support network of mothers who have daughters with breast cancer to help mothers become better “care partners.”

National Alliance for Caregiving
301.718.8444
www.caregiving.org
Provides support to family caregivers of older persons. Web site has a family care resource section, article and tips for caregivers and more.

National Association of Hospital Hospitality Houses, Inc.
800.542.9730
www.nahhh.org
Helps provide family-centered lodging and support services for people needing treatment away from home and their families. Nine houses located in North Carolina.

National Cancer Institute’s Cancer Information Service
800.4.CANCER (800.422.6237)
www.cancer.gov
This government organization is one of the best resources for cancer patients. Has free information for caregivers.

National Coalition for Cancer Survivorship
877.NCCS.YES (877.622.7937)
www.canceradvocacy.org
Advocacy group led by cancer survivors. Provides free “Cancer Survival Toolbox.” Has information on Caring for the Caregiver.

National Family Caregivers Association
800.896.3650
www.nfcacares.org
Offers education, support and advocacy for caregivers. Publishes a resource guide and other educational materials, including “The Resourceful Caregiver (Helping Family Caregivers Help Themselves).”

R.A. Bloch Cancer Foundation
816.WE.BUILD (816.932.8453) or 800.433.0464
www.blochcancer.org
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
800.I’M.AWARE (800.462.9273)
www.komen.org
Foundation for breast cancer research, education, screening and treatment. Has a toll-free helpline (above) and free booklets for caregivers.

Vital Options International Telesupport Cancer Network
www.vitaloptions.org
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 with cancer.

Well Spouse Foundation
800.838.0879
www.wellspouse.org
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
800.221.2141
www.y-me.org
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 and information.

Books and More

Breast 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 journey.

Caregiving: 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.

Close to 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.

The Comfort 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 with care.

Confronting 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.

It Takes 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 to 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.

Partners 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.

Prayer, 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.

Share the 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.

Straight 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 cancer survivor.

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.

Talk Before 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 friendships.

Tears of 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).

When the 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 supportive.

When Your 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.

Web Sites

Association of Cancer Online Resources (ACOR)
www.acor.org
Hosts public online support groups. Click on “Mailing Lists” to see a listing. Groups include:

• BC-SUPPORTERS (partners of breast cancer patients)
• CAREGIVERS (family/caregivers of cancer patients)
• PAIN-CAREGIVERS (family/caregivers of patients suffering from cancer pain)
• FACING-AHEAD (people facing the death of a loved one)

Full Circle of Care
www.fullcirclecare.org
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
www.oncolink.org/coping
Can subscribe to a caregiver or hospice list. The site has personal stories and links to other resources.