What You Need to Know as a Cancer Caregiver

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Legal issues

To learn more about caregiving and coping

From your American Cancer Society

The following related information may also be helpful to you. These materials may be ordered from our toll-free number, 1-800-227-2345, or read online at www.cancer.org.

About Caregiving

What It Takes to Be a Caregiver

Listen With Your Heart (also in Spanish)

Caring for the Patient With Cancer at Home: A Guide for Patients and Families (also in Spanish)

Home Care Agencies (also in Spanish)

Distress Checklist for Caregivers

Coping Checklist for Caregivers

Coping with cancer and treatment

After Diagnosis: A Guide for Patients and Families (also in Spanish)

Coping With Cancer in Everyday Life (also in Spanish)

Choosing a Doctor and a Hospital (also in Spanish)

Health Professionals Associated With Cancer Care

Talking With Your Doctor (also in Spanish)

Understanding Chemotherapy: A Guide for Patients and Families (also in Spanish)

Understanding Radiation Therapy: A Guide for Patients and Families (also in Spanish)

Surgery (also in Spanish)

Medicine List

Nutrition for the Person With Cancer: A Guide for Patients and Families (also in Spanish)

Anxiety, Fear, and Depression

Sexuality for the Man With Cancer (also in Spanish)

Sexuality for the Woman With Cancer (also in Spanish)

Children and family members

Helping Children When a Family Member Has Cancer: Dealing With Diagnosis (also in Spanish)

Helping Children When a Family Member Has Cancer: Dealing With Treatment (also in Spanish)

Where to Turn - Patient and Family Support Program (brochure)

Job, insurance, money, and legal issues

Americans with Disabilities Act: Information for People Facing Cancer (also in Spanish)

What is COBRA? (also in Spanish)

Family and Medical Leave Act (FMLA) (also in Spanish)

Health Insurance and Financial Assistance for the Cancer Patient (also in Spanish)

How to Find a Financial Professional Sensitive to Cancer Issues: Financial Guidance for Cancer Survivors and Their Families

In Treatment: Financial Guidance for Cancer Patients and Their Families (also in Spanish)

Advance Directives

Advanced illness

Advanced Illness: Financial Guidance for Cancer Survivors and Their Families

Advanced Cancer (also in Spanish)

Nearing the End of Life (also in Spanish)

Helping Children With Cancer in the Family: Dealing With Terminal Illness

Books

The following books are available from the American Cancer Society. Call us at 1-800-227-2345 to ask about costs or to place your order:

Cancer in the Family

Caregiving: A Step-by-Step Resource for Caring for the Person With Cancer at Home

Couples Confronting Cancer: Keeping Your Relationship Strong

Crossing Divides: A Couple’s Story of Cancer, Hope, and Hiking Montana’s Continental Divide

National organizations and Web sites*

Along with the American Cancer Society, other sources of information and support include:

Family Caregiver Alliance (FCA)/National Center on Caregiving
Toll-free number: 1-800-445-8106
Web site: www.caregiver.org

    Provides information and resources on long-term caregiving, some info in Spanish and Mandarin

National Alliance for Caregiving (NAC)
Web site: www.caregiving.org

    A national coalition of organizations focused on caregiving issues; provides www.familycaregiving101.org, a resource for answers, new ideas, and helpful advice for caregivers.

National Family Caregivers Association (NFCA)
Toll-free number: 1-800-896-3650
Web site: www.thefamilycaregiver.org

    A national, non-profit, membership association whose mission is to support, educate, and empower family caregivers to help them become their own advocate.

Well Spouse Association (WSA)
Toll-free number: 1-800-838-0879
Web site: www.wellspouse.org

    A national, non-profit membership organization (dues are charged) which provides emotional support to spouses and partners of chronically ill and/or disabled people. Also offers Regional Respite Weekends for spousal caregivers

National Respite Locator Service
Web site: www.respitelocator.org

    Helps caregivers and professionals find respite services in their state and local areas

Lotsa Helping Hands
Web site: www.lotsahelpinghands.org

    Volunteer coordination service for friends, family, colleagues, and neighbors to help loved ones in need. You can set up a free online program that allows volunteers to sign up to help with meals, rides, and other tasks on an easy-to-use, private group calendar.

CaringBridge
Web site: www.caringbridge.org

    Provides free personal Web sites that make it easy to stay connected to family and friends during illness and treatment; allows patients and caregivers to keep loved ones informed, as well as get and receive pictures and messages privately online.

American Association for Marriage and Family Therapy
Telephone: 703-838-9808
Web site: www.aamft.org

    Sponsors www.therapistlocator.net which provides referrals to local marriage and family therapists. The site also contains educational materials on helping couples live with illness, as well as other issues related to families and health.

Cancer Legal Resource Center
Toll-free number: 1-866-843-2572 (1-866-THE-CLRC)
TDD: 1-213-736-8310
Web site: www.cancerlegalresourcecenter.org

    A non-profit program offering free and confidential information and resources on cancer-related legal issues to cancer survivors, their families, friends, employers, health care professionals, and others coping with cancer

Cancer Hope Network
Toll-free number: 1-877-467-3638 (1-877-HOPENET)
Web site: www.cancerhopenetwork.org

    Volunteers provide free and confidential one-on-one telephone support for people with cancer and family members.

CancerCare
Toll-free number: 1-800-813-4673 (1-800-813-HOPE)
Web site: www.cancercare.org

    Free professional support, such as phone counseling, online support groups, and educational materials, for people with cancer, their loved ones, and caregivers. Also offers CancerCare for Kids at www.cancercareforkids.org or CancerCare’s main number, above. This program is for kids with a parent, sibling, or other family member who has cancer. It offers practical support, education, and counseling for parents and children.

Cancer Support Community (was Gilda’s Club)
Toll-free number: 1-888-793-9355
Web site: www.cancersupportcommunity.org

    Provides support for those living with cancer and their loved ones. Offers information, stress management, and online support groups led by professionals, including some in Spanish; has a special subsite (http://grouploop.org/) for teens and parents.

National Cancer Institute
Toll-free number: 1-800-422-6237 (1-800-4-CANCER)
Web site: www.cancer.gov

    A good source of up-to-date information about cancer for patients and their families.

*Inclusion on this list does not imply endorsement by the American Cancer Society.

No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at 1-800-227-2345 or visit www.cancer.org.

References

Daly BJ, Douglas S, Lipson A, Foley H. Needs of older caregivers of patients with advanced cancer. J Am Geriatr Soc. 2009;57(Suppl 2):S293-S295.

DuBenske LL, Wen KY, Gustafson DH, et al. Caregivers’ differing needs across key experiences of the advanced cancer disease trajectory. Palliat Support Care. 2008;6(3):265-272.

Golant M, Haskins NV. “Other cancer survivors:” The impact on family and caregivers. Cancer J. 2008;14(6):420-424.

Hara RT, Rose SL. Cancer Patients and Domestic Violence: Providing Safety and Support. Supp Onc. 2006;4(1):31-33.

MetLife Mature Market Institute. Miles Away: The MetLife Study of Long-distance Caregiving. Findings from a National Study by the National Alliance for Caregiving with Zogby International. July 2004.

National Institute on Aging. So Far Away: Twenty Questions for Long-Distance Caregivers. Accessed at www.longdistancecaregiving.com/Long_Distance_Caregiving_So_Far_Away.pdf on February 10, 2012.

Rohleder N, Marin TJ, Ma R, et al: Biological cost of caring for a cancer patient: Dysregulation of pro- and anti-inflammatory signaling pathways. J Clin Oncol. 2009;27:2909-2915.

Sagawa R, Akechi T, Okuyama T, et al. Etiologies of delirium and their relationship to reversibility and motor subtype in cancer patients. Jpn J Clin Oncol. 2009;39(3):175-182.

Yabroff KR, Kim Y. Time costs associated with informal caregiving for cancer survivors. Cancer. 2009;115(18 Suppl):4362-4373.


Last Medical Review: 02/14/2012
Last Revised: 03/23/2012