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Welcome to the Care for the Caregiver Corner
Caregivers face immense challenges as they try to juggle care for their loved one, attend to other family responsibilities and in some cases, work outside the home. But whatever your personal situation as a caregiver might be, it is important not to lose sight of ways in which you can care for yourself, in addition to your family member.
• Read the Psychosocial Aspects of Caregiving- The ABTA Social Workers presented this informative PowerPoint at the Northwestern Brain Tumor Institute's Caregiver Workshop
• Read the Caregiver Journey - A PowerPoint presentation from the ABTA 35th Anniversary Sharing Hope Meeting.
• Read Advice for Caregivers
• Read Care for the Caregiver
For more information and support for caregivers, please click one of the links below:
Face to Face Support Groups
ABTA Connections Pen Pal program
Orientation to Caregiving Handbook
Online Support Groups and Websites
Resources for Stress Management and Self-Care
Organizations and Programs
Governmental Resources
Products for Home Care
We offer listings of support groups for both patients and caregivers. Please contact our social workers at 800-886-2282 or email us a socialwork@abta.org if you would like to receive the list for your state.
ABTA CONNECTIONS PEN PAL PROGRAM
A program to help connect brain tumor patients or caregivers with others who are in a similar situation. Please contact our social workers at 800-886-2282 or socialwork@abta.org if you would like to know how to be part of this program and connect with other caregivers.
Please click here to learn more about the ABTA Connections Pen-Pal Program.
ORIENTATION TO CAREGIVING HANDBOOK
Caregivers Project, a collaboration between UCSF Osher Center for Integrative Medicine and the UCSF Department of Neurological Surgery, offers a Handbook for Family Caregivers of Patients with Brain Tumors. This resource helps caregivers understand brain tumors, what to expect, how to care for a loved one, paying for healthcare, planning for the future and much more.
Please click here to download the Orientation to Caregiving Handbook.
If you would like a copy mailed to you, please contact our social workers at 800-886-2282 or socialwork@abta.org.
ONLINE SUPPORT GROUPS AND WEB SITES
There are a variety of internet-based resources, including online support groups, listserves, chat rooms, message boards and other internet communities of interest, through which caregivers can share information and support each other. There are also web sites focused on the needs of caregivers. These internet-based forums offer an alternative for those who do not have access to a face-to-face support group in their area, or who prefer to communicate and seek information via the internet. Access is easy regardless of the weather, time, or location. Most online forums require that you subscribe or register prior to sending messages. After subscribing as directed, you'll receive a confirmation as well as a welcome message. Each forum has its own “netiquette” rules and procedures. Save those guidelines; they will also tell you how to unsubscribe should you so choose. The group may also provide you with directions for obtaining your email in “digest” form—this is a simple way of gathering all the participant messages into one email or one folder. Below are some online support resources and web sites, specifically geared for caregivers.
AARP
www.aarp.org/family/caregiving/
A web site for caregivers offering message boards and articles on topics such as guardianship, long distance caregiving and stress management. Caregivers can access extensive tools filled with interactive features, such as expert videos, calculators and worksheets.
AND THOU SHALT HONOR
www.andthoushalthonor.org
A web site developed in connection with Bill Moyers’ PBS Special on caregiving. Includes a caregiving resource center, a directory of community services for caregivers and books and tapes.
BRAIN TUMOR CAREGIVERS
www.braintrust.org
A special interest online community for caregivers of brain tumor patients facilitated through The Healing Exchange Brain Trust.
CARE TO SHARE CANCER CONNECTION
314-241-1600
www.nationalchildrenscancersociety.com
A moderated online support program of the National Children’s Cancer Society for parents to share information and experiences about their children on a wide range of topics. To participate, go to www.nationalchildrenscancersociety.com. Click on “Care to Share Message Board” and follow the instructions to register.
CAREFLASH
www.careflash.com
CareFlash provides a common place on the Internet to share information surrounding a loved one’s health circumstances. They also allow the caregiver a way to reach out to their community communicating the needs of the patient. This allows people to donate time, meals or services during a stressful time. This is all available in a private, organized website, individual for each patient. Also available are hundreds of 3-D healthcare animations on a variety of health related topics. These are available in Spanish, Arabic, Dutch and Hungarian.
CAREGIVER MEDIA GROUP
800-829-2734
954-893-0550
www.caregiver.com
A web site offering internet discussions, a care directory, listings of caregiver support groups throughout the country, carelinks, caregiver stories, and a Caregiver Mall, which offers books videos, products and services for caregivers. This organization also hosts and annual caregivers conference and publishes print and online versions of “Today’s Caregiver” magazine, which features guest columns, Caretips, and CareNotes. Hosts conferences throughout the United States.
CAREGIVERS DIRECTORY
www.caregiversdirectory.com
Offers articles on caregiving, information about support groups, a Caregiver’s Resource newsletter and links to a variety of services for caregivers, including products, adult day care, home health, homemaker, hospice, nursing home and respite services by state. It is designed to view caregiving as a progressive continuum through the planning, decision making and hands on stages of illness.
CAREPAGES
888-852-5521
www.carepages.com
CarePages is a service that allows caregivers to create their own webpage to share information with designated family and friends. Sponsored by several healthcare organizations and hospitals, this service is free to families.
CARINGBRIDGE
www.caringbridge.org
This web site gives caregivers the ability to create a personal webpage to share information with designated family and friends. It eases the burden of keeping family and friends informed. Patients and caregivers can draw strength from messages of support.
CARINGROAD
651-452-7940
www.caringroad.org
An interactive online caregiver support network. Also offers practical information and personal stories. CaringRoad was created to connect family caregivers seeking the support and friendship of other family caregivers in an online community.
CENTER FOR FAMILY CAREGIVERS
773-343-6341
www.caregiving.com
Offers a variety of resources for caregivers, including online support groups, an e-newsletter, caregiver message board, a caregiving packet, caregiver stories, tips, seminars and workshops.
FAMILY CAREGIVER ALLIANCE
National Center on Caregiving
800-445-8106
www.caregiver.org
An online discussion groups for caregivers. Also offers literature and resource information, including a newsletter, fact sheets in English, Chinese and Spanish, information about specific diseases and caregiving advice and strategies.
LOTSA HELPING HANDS
www.lotsahelpinghands.com
A free web service that allows caregivers to coordinate caregiving needs among friends and family members and other helpers. It’s an easy to use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in to help with tasks necessary for life to run smoothly during times of medical crisis or family caregiver exhaustion. It also offers a place to keep friends and family informed with updates, photos, message boards and more.
MY LIFELINE.ORG
www.mylifeline.org
Offers a helping calendar, an easy tool where friends and family can view the treatment schedule and learn how to best help. Also provides learning links, joke of teh day and inspirational messages.
NATIONAL ALLIANCE FOR CAREGIVING
www.caregiving.org
Offers links to caregiver organizations and resources for caregivers and professionals. Their goal is to improve the quality of life for families and care recipients.
NATIONAL ORGANIZATION FOR EMPOWERING CAREGIVERS
www.care-givers.com
Offers a variety of online forums for caregivers, articles on caregiving, a print and online newsletter, caregiver stories, featured expert columns and emotional and spiritual support through journaling, healing circle, inspiration and humor.
NATIONAL RESPITE LOCATOR SERVICE
919-490-5577
www.respitelocator.org
Respite services offer a temporary break from caregiving responsibilities for caregivers of those with disabilities, chronic and life threatening illnesses. Call or search web site for services in your state.
NET OF CARE
Department of Pain Medicine and Palliative Care
www.netofcare.org
Net of Care is a resource network for caregivers. Their site helps caregivers feel less isolated and overwhelmed by making them the best caregiver they can be. Their site features online support, education and information on the daily aspects of caregiving. As well as searchable local and national resource database, telephone support groups and an E-newsletter.
WELL SPOUSE ASSOCIATION
800-838-0879
www.wellspouse.org
Offers bulletin boards, an email listserve and an online mentorship program to link a spouse caregiver to another more experienced spouse caregiver by email or phone. Also offers “round robins” to connect spouses to each other through letter writing and face-to-face support groups throughout the country. Provides literature and a quarterly newsletter, “Mainstay” for members.
WHAT FRIENDS DO
www.whatfriendsdo.com
What Friends Do is designed to coordinate the support of friends and family for individuals experiencing a crisis or life changing event. Helping a friend through a life-changing event involves lending a hand with meals, transportation and other tasks. The site offers its users the ability to create a free custom website to support a friend during a life-changing event.
RESOURCES FOR STRESS MANAGEMENT AND SELF-CARE
Many hospitals now offer programs that utilize the connection between mind, body and spirit to promote relaxation, anxiety management and wellness. You can contact the social work department or center for integrative medicine at your local hospital or medical center or your doctor’s office to see what programs or classes are available in your community.
CARE TRUST PUBLICATIONS
800-565-1533
www.comfortofhome.com
Offers a variety of resources for caregivers including a CD and audio tape for stress reduction and meditation designed for caregivers, books, videos and caregiver links.
HEALTH JOURNEYS
800-800-8661
www.healthjourneys.com
Offers a variety of videos, cassettes, CDs, software and books to promote relaxation, wellness and healing. Products include resources on guided imagery, meditation and self-care.
SOOTHING THE SENSES CD
888-357-5867
www.sensoryresources.com
A musical CD of gentle piano pieces performed by jazz pianist Fred Hersch to help their mind, body and spirit relax. Available from Sensory Resources.
CANCERCARE
800-813-4673
www.cancercare.org
Offers a telephone support group and an online support group for caregivers. Also offers a variety of resources, including telephone education workshops, caregiver links, a bookstore on caregiver issues, practical tips and suggestions for coping with the emotional issues affecting caregivers. These services as well as counseling, financial assistance and practical help are provided by trained oncology social workers free of charge.
FAITH IN ACTION
877-324-8411
www.fianationalnetwork.org
A nationwide interfaith volunteer caregiving program of The Robert Wood Johnson Foundation, offering services to individuals with long term disabilities and their families. Services include providing rides, running errands, home visiting and helping with day-to-day tasks such as bill paying. Can search web site by state or zip code for Faith In Action programs throughout the country.
AMERICAN RED CROSS FAMILY CAREGIVING PROGRAM
www.redcross.org/services/hss/care/family.html
A program to teach skills to family caregivers. Offers hour-long modules on topics such as home safety, personal care, care for the caregiver, and legal and financial issues. To find a program near you, contact your local American Red Cross Chapter, listed in your phone directory or search online.
THE NATIONAL COALITION FOR CANCER SURVIVORSHIP (NCCS)
877-622-7937
www.canceradvocacy.org
Offers information about caregiving through online resource, “Essential Care” accessible from their web site. Also offers the Cancer Survival Toolbox Educational Program on a range of topics, including “Care for the Caregiver.” Available to listen online or as a CD.
NATIONAL FAMILY CAREGIVERS ASSOCIATION
800-896-3650
www.thefamilycaregiver.org
Offers practical information, support and public awareness resources and a variety of publications.
STRENGTH FOR CARING
www.strengthforcaring.com
Offer caregiving tips, practical advice for daily care, information on money management, health insurance, legal issues and living options. Message board available.
THE WELLNESS COMMUNITY
888-793-9355
www.thewellnesscommunity.org
Provides free psychological and emotional support to cancer patients and their families. Facilitates support groups, offers help with stress reduction, cancer education, workshops, classes and social events. Call or visit their web site to obtain a list of their centers throughout the US. Also offers a virtual wellness community through which services can be accessed online.
CENTERS FOR MEDICARE SERVICES
800-633-4227
www.medicare.gov
Offers a publication, “Medicare Basics: A Guide for Family and Friends of People with Medicare” that addresses Medicare coverage for home health, prescription drugs and nursing home care. Downloadable from their website or available to order free of charge.
FAMILY MEDICAL LEAVE ACT
866-487-9243
www.dol.gov/esa/whd/fmla/
Legislation that requires employers with 50 or more employees to offer up to 12-weeks of unpaid leave to eligible employees to care for a seriously ill family member (spouse, child or parent). For more information about this Act contact the US Dept. of Labor, Employee Standards Administration, Wage and Hour Division.
NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM
202-619-0724
www.aoa.gov
A program developed by the Administration on Aging of the US Dept. of Health and Human Services (HHS) following enactment of the Older Americans Act Amendments of 2000. It provides services for caregivers in partnership with Area Agencies on Aging and local community service providers, including information, assistance in accessing support services, caregiver training and respite care. At their web site click “Elders and Family” then click “For Caregivers." You can also call your local Area Agency on Aging in the city or government section of the telephone directory or look under “Aging” or “Social Services.”
THE CAREGIVERS MARKETPLACE
www.caregiversmarketplace.com
An online store for caregiver products. Offers a cash back program for eligible products, such as nutrition, incontinence, bathing, skin care, digestive health and more.
April 2009
2720 River Road
Des Plaines, IL 60018
Phone: 847-827-9910
Fax: 847-827-9918
Toll-free Phone: 800-886-2282
E-mail: info@abta.org