AARP is a nonprofit, nonpartisan organization dedicated to making life better for people 50 and over. In the site's Family/Caregiving section, they provide useful information, such as providing care at home, managing stress, hiring home help, and communicating with health professionals. You will also find a variety of online tools, such as the AARP Caregiving ToolKit, featuring expert videos, calculators, and worksheets. By signing up to create a profile, you can share photos and videos, comment on articles and videos, connect with other family caregivers, and subscribe to a monthly e-newsletter. There is also a Benefits QuickLINK to search and apply for low and no-cost public benefits for caregivers, such as programs that can help you stay healthy, cover basic expenses, and assist older relatives in your care. You will, however, have to answer a series of personal questions first, including questions about your financial situation, to determine if you qualify for these programs. The functionality of this section comes from BenefitsCheckUp.
The Family Caregiving Alliance (FCA) is a nonprofit organization addressing the needs of families and friends providing caregiving support at home. FCA operates the National Center on Caregiving, which offers services such as Caregiver Alerts, which track legislation of importance to caregivers and sends out electronic updates, and fact sheets and monographs documenting caregiver issues, needs, services, and best practices. In the Caregiving Info & Advice section, you can read articles on topics such as "A Guide to Taking Care of Yourself," "Guidelines for Better Communication," and "Hands-On Skills for Caregivers." You can subscribe to seven free newsletters covering various aspects of caregiving. FCA also offers four different online support groups for caregivers and their loved ones, organized by disease and/or demographic. Much of the information on the site is also available in Spanish and Chinese.
Long Distance Caregiving @ National Institute on Aging
If you are trying to care for an elderly parent or relative from far away, you are not alone. The National Institute on Aging's online booklet, So Far Away: 20 Questions for Long-Distance Caregivers, provides ideas and resources to help you manage caregiving from a distance. The booklet covers many important issues, including ways you can keep up with your loved one's medical care and tips for determining when your loved one needs more care. You will find helpful suggestions for ways to talk with your loved one about their health and ability to manage on their own, without sounding negative or accusatory. There's also a list of questions to ask if you are interested in hiring a geriatric care manager - a licensed nursing or social worker who specializes in geriatrics and who can evaluate a parent's needs and coordinate care through community resources. The booklet is organized in a Q&A format and lists additional online resources for more information.
This site offers information about brain tumors, including how they are diagnosed and treated. Newly diagnosed patients and their loved ones can find support from others who are living with brain tumors through the Foundation's Patient and Caregiver Support Networks. These two online networks list patients and caregivers by tumor type and age, and each entry includes the contact's first name, information about the treatment they have received, and other relevant information. (This information is provided by patients and their caregivers.) You can send them a message through the Web site and, by supplying your e-mail address, you can receive replies. The site also lists local support groups by zip code and state, and offers message boards so brain tumor patients, survivors, family members, and caregivers can exchange ideas about treatment and offer emotional support, however you must register with the site first to use them.
National Family Caregivers Association (NFCA) educates and helps support the more than 50 million Americans who care for loved ones with a chronic illness or disability. Start with the Family Caregiving 101 section, where you can read Top10 questions, or find resources listed by the stage of caregiving you are in. You can join the FamilyCaregiving 101 Message Boards to ask questions of other caregivers; you must first submit an anonymous user name and valid e-mail address.
In the "Connecting Caregivers" section, the NFCA Story Project section you can share your own stories, read other family caregiving experiences, and search for Pen Pals, caregivers who wish to connect directly with other caregivers. NFCA also offers information ranging from national educational campaigns to tips and guides for family caregivers. These resources are available free of charge. You can also sign-up to become a member of the Family Caregiver Community, free of charge, to receive print and e-newsletters and access an online library of caregiving resources.
Support for Cancer Patients and Their Caregivers @ National Cancer Institute
The National Cancer Institute's online booklet, Taking Time: Support for People with Cancer, can help newly diagnosed cancer patients and their loved ones adjust to a diagnosis of cancer, talk about cancer, learn about their disease, feel more in control, and know where to turn for help.
Back to School: Washington University Department of Pediatrics
Back to School -- A Web resource from Washington University's Department of Pediatrics -- presents information regarding children returning to school after having being diagnosed and/or treated with cancer. There are checklists for parents, tips for teachers, and detailed information on the effects of cancer therapy. In addition, this site provides tools and resources for planning for a child's return to the classroom.
Penn State Pediatric Hematology/Oncology Home Care Guide
This guide, presented in .pdf format, has been written by cancer care professionals with help from home caregivers. There are twenty sections in all, broken down by specific problem areas, such as fever, constipation, mouth problems, bleeding, hair loss, going back to school, dealing with brothers and sisters, and depression. There is also a helpful fluid chart to determine the minimum amount of fluid your child needs to take every day during normal waking hours.
National Alliance for Caregiving: Lotsa Helping Hands
National Alliance for Caregiving (NAC) is a nonprofit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, disease-specific organizations, and corporations. The alliance has partnered with Lotsa Helping Hands, a free Web service that provides a private, group calendar where tasks a caregiver needs assistance with can be posted. Family and friends may visit the site and sign up online for a task. Tasks may include pitching in with meal delivery or offering rides. The Web site generates a report showing who has volunteered for which tasks and which tasks remain unassigned. The site tracks each task and notification and reminder e-mails are sent to the appropriate parties.
NAC has also created the Family Care Resource Connection, where you can search topics such as type of disease, housing and living arrangements, legal, financial, and/or communications issues, and/or enter your own keywords to find reviews and ratings on over 1,000 books, videos, Web sites, and other materials on caregiving. Each entry has been reviewed and rated for its quality, usefulness to family members, timeliness and accessibility. The resources are rated on a scale from 4 stars (the best) to 1 star. Reviews are prepared by experts in family caregiving and highlight the strengths and weaknesses of each item.
There are also several publications that you can download free of charge, such as "Care of the Family Caregiver: A Place to Start," and "Hospital Discharge Planning" (also available in Spanish).
CancerCare offers free counseling either individually or through professionally run support groups on a wide range of topics. Both types of counseling are offered online, by phone, or in person (at CancerCare locations in New York, Long Island, New Jersey, and Connecticut). CancerCare social workers can also guide patients and family members to counseling and support groups in their own communities.
A full listing of CancerCare support groups is available on the Web site. Online support groups via message boards are available 24 hours a day, 7 days a week and are moderated by professional oncology social workers. There are support groups for patients, caregivers, and those who have lost a loved one to cancer. These groups are sub-categorized by type of cancer, treatment side effects, age group, survivorship, and relationship to the patient, (e.g., parents, spouses, etc.). Participation in online support groups is free and confidential, but you must register to participate.
What is unique about CancerCare's online support groups is that the social worker facilitating the group maintains regular contact with each of its participants. This facilitator will reply to unanswered questions and concerns as needed and offer guidance and resources to the group. Support group participants can also contact their social worker at CancerCare if they need additional support.
Online Support Groups and Wellness Programs @ The Wellness Community
The Wellness Community provides free, online support groups for people with cancer and their loved ones. Support groups are also offered in person at each of the organization's 24 locations worldwide (mostly in the US), as are a full range of support services, including stress management sessions, educational programs, exercise sessions, and nutrition workshops. All services -- whether online or in person -- are free of charge.
Professionally facilitated online support groups are held weekly. There are groups for adults with cancer and for loved ones/caregivers. Support groups also are available in Spanish. To participate, you must register, a process that includes completing an online registration form.
The Patient/Partner Project, a member of the National Quality Caregiving Coalition of the Rosalynn Carter Institute, is a program focused on helping cancer patients by helping their partners and/or caregivers. The main focus of the program is to offer an automated, online system to keep family and friends informed about their loved one's condition. After registering, you can post private patient progress reports on the program's Web site. Whenever you post a progress report, the system will then send an e-mail to everyone you have specified to be notified. The e-mail provides them with a direct link to view the message you just posted, thus reducing the amount of time, energy, and stress it would take to update them all individually. A sample page can be viewed online before you register. The organization also offers a free e-mail mini-course, the "Six L's of Caring and Coping," as well as a series of articles on coping with serious illness sent every other day by e-mail.
