Caregiver Support

Former First Lady Rosalynn Carter is honorary chairperson of the Rosalynn Carter Institute at the Georgia Southwestern State University whose mission is to understand the care-giving process and discover new ways to assist formal and informal caregivers.

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Care-giving can be a daunting task. Whether a woman is caring for her children, an ailing spouse or an elderly parent, the strain can sometimes be enormous. It is especially difficult for those who must manage two all-consuming roles - that of caregiver and breadwinner. For many women, this dual role is not a matter of choice but a matter of necessity. It's important to take care of yourself first. Try to keep organized and learn how to advocate for the healthcare needs of your loved one.

This page offers caregivers many useful resources, links and tools to help you with this most important role.

Organizing Medicines

One tool many caregivers find helpful is a Medication Organizer Box – especially when managing more than one medication or dispensing pills at different times of the day. (see photograph below), available for purchase at most drugstores. Use this in combination with a Medication Record.

Links - Tools - Resources

• Community Resources
• Helpful Organizations
• National Self-Help Clearinghouses
• Information Clearinghouses
• Hotlines
• At-Home Care Plan and Weekly Activity Sheet
• Medication Record in English

• Medication Record in Spanish

• Child Development Scale - birth to 3 years
• Safety Checklist for Small Children.
• http://rci.gsw.edu - on-line support with chat room for caregivers

Community Resources

• Adult Day Care – Check your yellow page directory under "Day Care Centers - Adult". These facilities offer respite care for adults with medical needs. Your loved one may attend as often or as little as he/she would like. Adult Day Care is generally not covered by health insurers. The exceptions are Medicaid and some community care-funded programs which may provide for funding.
• Books on Care-giving–Check your local library for books like the ones listed below:
  • Helping Yourself Help Others –a book for Caregivers, by Rosalynn Carter and Susan K. Golant, Times Book, NY, NY 1994
  • The Home Alternative to Hospitals and Nursing Homes, M. Covell, Rawson Associates, NY 1983
  • For more information on this topic, do a topic search on "caregiving" at www.Amazon.com

  Social Services - Contact your local Board of Social Services and ask about Respite Care, federally-funded "Title" programs and other resources available to assist caregivers with elder care relief. 

  Visiting Nurse Association - Check your yellow pages directory under "Nurses". A registered nurse can be an invaluable resource person when planning “at-home” care. A visiting nurse is a trained professional. A visiting nurse is able to do a thorough health needs assessment and report results to a doctor, insurance company or other care provider. A visiting nurse is a strong health advocate and a vital link of support for “at-home” caregivers.

  On the web, go to www.caregiver.com to locate a daycare center (for child or elder care) nearest you (details on more than 90,000 childcare and 70,000 elder-care facilities nationwide).

  Helpful Organizations

• Administration on Aging, 330 Independence Ave. SW, Washington, DC 20201. 

• Allergy and Asthma: National Allergy and Asthma Network, 3554 Chain Bridge Road, Suite 200, Fairfax, VA 22030-2709. 703.385.4403. Support for parents and practical advice.

• American Association for Geriatric Psychiatry, PO Box 376-A, Greenbelt, MD 20768. ph 301.220.0952

• American Association of Retired Persons (AARP), 601 E. Street, NW, Washington, DC 20049. ph 800.424.2277

• American Council of the Blind, 1155 15th St. NW, Suite 720, Washington, DC 20005. ph 202.467.5081 or 800.424.8666 

• American Foundation for the Blind, 15 W 16th St., NY, NY 10011. ph 800.AF-BLIND. Ask for the "Director of Services for the Visually Impaired," a state-by-state listing of services available nationally.

• American Society on Aging ph 415.882.2910

• Arthritis: The Arthritis Foundation, 1314 Spring St., Atlanta, GA 30309. ph 800.283.7800 

• Association for Adult Development and Aging c/o American Counseling Association. ph 703.823.9800

• Bereavement: Compassionate Friends, PO Box 3696, Oakbrook, IL 60522-3696. ph 708-990-0010. Support groups and information for bereaved family members. Emphasizes positive resolution to grief.

• Children of Aging Parents ph 215.945.6900

• Concerned Relatives of Nursing Home Patients, PO Box 18820, Cleveland Heights, OH 44118. ph 218.3321.0403.

• Gerontologic Society of America ph 202.842.1275

• Hospice: National Hospice Organization, 1901 N. Moore St, Suite 901, Arlington, VA 22209. ph 800.658.8898.

• Hospice: Children's Hospice International, 901 N. Washington St., Suite 700, Alexandria, VA 22314. ph 703.684.0330 or 800.242.4453.

• Legal Problems, Wills, Guardianships and Trusts:  National Academy of Elder Law Attorneys ph 602. 881.4005

• Lupus: The Lupus Foundation of America, ph 800.558.0121 or 800.800.4532 

• Mended Heart, c/o American Heart Association, 7272 Greenville Avenue, Dallas, TX 75231. ph 214-706.1442  For persons who have heart disease, their families and friends.

• Mental Illness: COMPEER, Inc., Monroe Square, Suite B-1, 259 Monroe Ave., Rochester, NY 14607. ph 716.546.8280. Matches volunteers with people needing assistance.

• Mental Illness: National Alliance for the Mentally Ill, 2102 Wilson Blvd, Suite 302, Arlington, VA 22201. ph 800.951.NAMI or 703.524.7600

• National Council on Aging, 409 3rd St., SW, Suite 200, Washington, DC 20024. ph 202.479-1200 or 800.424.9046.

• National Institute of Mental Health, Aging Branch. ph 301.443.1185

• National Support Center of Families of the Aging. ph 215.544.5933

• Older Women's League, 666 11th St., NW, Suite 700, Washington, DC 20001. ph 202.723.6686  Advocacy group for women caregivers in their later years.
• Stroke Support: National Stroke Association (NSA), 840 East Orchard Road, Suite 1000, Englewood, CO 80111-5015 or visit the NSA website at www.stroke.org .The site offers online support to family members. Email address: info@stoke.org
• Stroke Support: American Stroke Association's Stroke Family "Warmline" at 1.800.553.6321. The American Stroke Association is a division of the American Heart Association and offers informational packages for professionals, stroke patients and family members of stroke sufferers. Visit ASA website at www.strokeassociation.org
• Young Hearts - P.O. Box 3139, Maple Glen, PA 19002.ph 215.628.4920 / Fax 215.628.4203. email: younghearts1@aol.com  Young Hearts is a peer support group for the younger adult cardiac patient between the ages of 20 and 55. Young Hearts is affiliated with the Cardiac Support Coalition.

   

National Self-Help Clearinghouses

• The American Self-Help Clearinghouse, St. Clare's-Riverside Medical Center, 25 Pocono Road, Denville, NJ 07834. Phone (201) 625-7101.
• California Self-Help Center, 405 Hilgard Avenue, Los Angeles, CA 90024. In in California, call (800) 222-54465. Out of state, (310) 825-1799.
• National Mental Health Consumer's Self-Help Clearinghouse, 311 S. Juniper Street, Room 1000, Philadelphia, PA  19107. Phone (800) 553-4539.
• The National Self-Help Clearinghouse, City University of New York, Room 620, 25 West 43rd Street, New York, NY 10036. Phone (212) 642-2944.
• Self-Help Center, 1600 Dodge Avenue, Suite S-122, Evanston, IL 60201. If in Illinois, (800) 322-MASH. Out of state, (708) 328-0471.

 

Information Clearinghouses

Aging

• Brookdale Center for Aging (800) 648-COPE  (for information on adult day-care referrals)
• Eldercare Locator (800) 677-1116. A public service, operating in conjunction with the U.S. Administration on Aging that provides referrals to local community agencies for home care, respite services, adult day care, senior centers, legal assistance, home-delivered meals, and transportation.

AIDS

• Centers for Disease Control National AIDS Clearinghouse, P.O. Box 6003, Rockville, MD 20850. (800) 458-5231. 

Alcohol and Drug Information

• National Clearinghouse, P.O. Box 2345, Rockville, MD 20852. (301) 495-4484.

Arthritis

• National Arthritis Musculoskeletal, and Skin Disease, Information Clearinghouse. (301) 495-4484.

Cancer

• Cancerfax (301) 402-5874 for instructions and codes. This service allows access to the national Cancer Institute's Physician's Data Query system via fax machine. Information available for professionals and also for patients and family members.
• Cancer Information Service Office of Cancer, national Cancer Institutes/National Institutes of Health, Building 31, 100A24, 9000 Rockville Pike, Bethesda, MD 20892.
• National Alliance of Breast Cancer Organizations (NABCO) 1180 Avenue of the Americas, 2nd Floor, New York, NY 10036. (212) 719-0154. Clearinghouse for breast cancer information.

Deafness

• National information Center on Deafness, Galludet University, 800 Florida Avenue, N.E., Washington, DC 20002. (202) 651-5051.

Developmental Disabilities

• National Information Clearinghouse for Infants with Developmental Disabilities and Life-Threatening Conditions, University of South Carolina, School of Medicine, Dept of Pediatrics, Columbia, SC 29208.

Diabetes

• National Diabetes Information Clearinghouse, Box NDIC, 9000 Rockville Pike, Bethesda, MD 20892. (301) 654-3327.

Digestive Diseases

• National Digestive Diseases Information Clearinghouse, Box NDDIC, 9000 Rockville Pike, Bethesda, MD 20892.

Disability

• Clearinghouse on Disability Information, Office of Special Education and Rehabilitative Services, U.S. Department of Education, Room 3132, Switzer building, Washington, DC, 20202-2524. Phone (202) 205-8241. Ask for the "Pocket Guide to Federal help for Individuals with Disabilities".

Children and Youth Disabilities

• National Information Center for Children and Youth with Disabilities, P.O. Box 1492, Washington, DC 20013 phone 800.999.5599

Health

• National Health Information Center. phone 800.336.4797. National Heart, Lung, Blood Institute Information Center. phone 301-251.1222. For information on high blood pressure, heart disease, cholesterol, smoking, lung diseases, and blood diseases

Kidney and Urologic

• National Kidney and Urologic Disease Information Clearinghouse, P.O. Box NKUDIC, 9000 Rockville Pike, Bethesda, MD 20892. phone 301.654.4425

Lung

• National Jewish Lung Line Information Service, phone 800.222-LUNG

Maternal and Child Health

• National Center for Education in Maternal and Child Health, phone 703.524.7802.
• National Maternal and Child Health Clearinghouse, phone 202.625.8410

Mental Health

• National Mental Health Consumer Self-Help Clearinghouse, 311 S. Juniper St., Suite 902, Philadelphia, PA. phone 800.688.4226.

Rare Disorders

• National Organization for Rare Disorders, P.O. Box 8923, New Fairfield, CT 06812. phone 800.999.NORD

Substance Abuse

• National Center for Substance Abuse Prevention, Workplace Helpline, Department AL, P.O. Box 1909, Rockville, MD 20852. phone 800.843.4971. For information on creating a drug-free workplace.

Hotlines

• AIDS: The CDC National AIDS Hotline 1-800-342-AIDS
• AUTISM: National Autism Hotline 1-304-525-8014
• BURNS: National Burn Victim 1-101-676-7700
• CANCER: American Cancer Society 1-800-ACS-2345
• CANCER: National Cancer Institute 1-800-4-CANCER
• CANCER CHEMOTHERAPY 1-800-55-CHEMO and 1-908-233-1103 in New Jersey
  This national agency matches cancer patients with volunteers who have had a similar diagnosis. Volunteers provide emotional support on the phone or in person, if possible.
• COCAINE ADDICTION 1-800-COCAINE
• INSURANCE: National Insurance Consumer 1-800-942-4242
• MEDICARE HOTLINE 1-800-638-6833
• PARALYSIS: American paralysis Association Spinal Cord Injury Hotline 1-800-526-3456
• SUBSTANCE ABUSE:
  Center for Substance Abuse Treatment, National Drug Information Treatment and Referral Hotline 1-800-662-HELP and 1-800-66-AYUDA (in Spanish)
• SURGICAL OPINION: Second Surgical Opinion Hotline (Medicare) 1-800-638-6833 Will connect you with agencies in your area which will refer three qualified doctors.
• SOCIAL SECURITY ADMINISTRATION 1-800-772-1213 and 1-800-325-0778 (TTD)
• SUICIDE AND CRISIS HOTLINE 1-800-333-4444 (24-hour service)

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©1999-2000; updates: 2002, 2004, 2005, 2007 Women's Heart Foundation, Inc. All rights reserved. Unauthorized use prohibited. The information contained in this Women's Heart Foundation (WHF) Web site is not a substitute for medical advice or treatment, and WHF recommends consultation with your doctor or health care professional.