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

Here is more information you might find helpful. You also can order free copies of our documents from our toll-free number, 1-800-227-2345, or read them on our website, 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)

Understanding Cancer Surgery: A Guide for Patients and Families (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)

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

Your American Cancer Society also has books that you might find helpful. Call us at 1-800-227-2345 or visit our bookstore online at www.cancer.org/cancer/bookstore/to find out about costs or to place an order.

National organizations and websites*

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

Just for caregivers: information, support, and respite

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

    Provides information and resources for long-term caregiving, including practical skills, how to hold family meetings, decision-making, assistive equipment, online support, and more; some info in Spanish and Mandarin

National Alliance for Caregiving (NAC)
Website: http://www.caregiving.or

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

Well Spouse Association (WSA)
Toll-free number: 1-800-838-0879
Website: 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. Helps with setting up calendars to organize help from others. Also offers Regional Respite Weekends for spousal caregivers

Caregiver Action Network
Telephone: 202-772-5050
Website: www.caregiveraction.org

    Supports and educates family caregivers, helps them connect with other caregivers; and helps them become their own advocates. Membership is free to caregivers.

National Respite Locator Service
Website: www.respitelocator.org

    Helps caregivers and professionals find respite services in their state and local areas so that they can take short-term breaks from caregiving

Medicare: Caregiving
Website: www.medicare.gov/campaigns/caregiver/caregiver.html

    Fact sheets and information for caregivers. Choose “What caregiver support is available in my area?” for information on the Medicaid Cash and Counseling program that can pay some caregivers for their time.

Tools to organize family, friends, and share information

Lotsa Helping Hands
Website: www.lotsahelpinghands.com

    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
Website: www.caringbridge.org/

    Provides free personal websites 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.

Legal and mental health help

American Association for Marriage and Family Therapy
Telephone: 703-838-9808
Website: 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)
TTY: 213-736-8310
Website: www.cancerlegalresourcecenter.org/

    A non-profit program of the Disability Rights Legal Center offering free and confidential information and resources on cancer-related legal issues such as insurance, disability, discrimination, child custody, residency, and more to cancer survivors, their families, friends, employers, health care professionals, and others coping with cancer.

Information and support for people with cancer and their families

Cancer Hope Network
Toll-free number: 1-877-467-3638 (1-877-HOPENET)
Website: http://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)
Website: 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. Spanish also available.

Cancer Support Community (was Gilda’s Club)
Toll-free number: 1-888-793-9355
Website: 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 sub-site (http://grouploop.org/) for teens and their parents.

National Cancer Institute
Toll-free number: 1-800-422-6237 (1-800-4-CANCER)
TTY: 1-800-332-8615
Website: www.cancer.gov

    An excellent source of up-to-date information about cancer for patients, families, and caregivers.

*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.

Romito F, Goldzweig G, Cormio C, Hagedoorn M, Andersen BL. Informal caregiving for cancer patients. Cancer. 2013;119(Suppl 11):2160-2169.

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: 03/05/2014
Last Revised: 04/28/2014