Caregiving

Better health care has led to more people living longer. There are far more persons over 70 living today than in any other time in human history. In addition, persons with disabilities that previously were immediately life-threatening or severely limited life expectancy are now living to a ripe old age. New medications for mental illness make it possible for persons who would have previously lived out their lives in a mental intistitution to live in the community.

Yet, such persons still need special supports to be a part of the community. Many need caregivers to give the extra attention to the special needs caused by disabilities, mental illness, and the aging process.

Many more of us in the general society will become caregivers for at least a portion of our lives as we give special attention to aging parents and spouses. This page is devoted to caregiving and the needs of caregivers.

Sites reviewed on this pages are grouped into a number of categories. Some web sites are more educational and focused on an awareness of caregiving as a major factor in our society. Others are built more on the concept of support for the caregivers. Finally, a special kind of support is respite services which gives caregivers a much-needed break.

Awareness of Caregiving Issues

"& Thou Shalt Honor"
This website is a supplementary resource to the PBS family caregiving documentary "& Thou Shalt Honor" which aired on many PBS stations in October 2002. It recognizes particularly the millions of persons caring for aging parents, spouses, and friends, but also touches on children with disabilities as well. A tape and book from the show are available.

Caregiving Resource Center
The producers of the landmark PBS family caregiving documentary "& Thou Shalt Honor" have founded the Thou Shalt Honor Foundation to support family caregivers efforts through advocacy, public education and multimedia communications, including a 25-city series of Town Hall meetings on chronic care issues. This website has a number of interesting articles for both family and professional caregivers and their advocates.

Learning to Fall: The Blessings of an Imperfect Life
Phil Simmons, a college professor and writer from New Hampshire, has written a book about his journey with ALS (Lou Gehrig's Disease). His story was featured on National Public Radio in January 2002 for the remarkable way in which family and friends formed a "caregiving circle" around him. He died in July 2002. The website is maintained in his memory and copies of his book (excerpt) are available.

Share the Care
Cappy Capossela and Sheila Warnock have written a very interesting book sub-titled "How to Organize a Group to Care for Someone Who Is Seriously Ill.

Caregiver Support

Family Caregiver Alliance
Founded in 1977, Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. The website offers assistance on the issues of education, services, research and advocacy. Additional services are available for persons in California.

National Family Caregivers Association (NFCA)
NFCA is a grass roots organization created to educate, support, empower and speak up for the millions of Americans who care for chronically ill, aged or disabled loved ones. The site includes research, caregiving tips, news and information, and much more. Membership in the organization which includes a free caregiver welcome kit and a quarterly newsletter is available free to all family caregivers in the United States.

Caregiver.com
From the publishers of Today's Caregiver, a magazine targeted mostly to adult children taking care of their aging parents. A free weekly e-mail newsletter is attractively presented and helpful.

Respite

Respite is a temporary break for caregivers from the responsibilities of caregiving to rest, relax, and pursue recreational opportunities. Respite is particularly important for parents and others caring for a child (even an adult child) with special needs. Respite is also essential in situations where an adult child is caring for an aging parent.

National Respite Locator Service
The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area. The service is also useful when a family travels or must move to another state. There are also links to adult day services and camps for children with special needs.

ARCH National Resource Center
Part of the Chapel Hill Training-Outreach Project at the University of North Carolina, ARCH helps support service providers and families through training, technical assistance, evaluation, and research. Their goals are to reduce family stress, support family stability, prevent abuse and neglect, and minimize the need for out-of-home placements.

Respite Care: A Gift of Time
This is a 10-page article from the National Information Center for Children and Youth with Disabilities on respite care. Gives helpful background information.

The ARC's Q&A on Respite Care
A short article giving basic information on respite care with a focus on persons with developmental disabilities.

KidsCamps.com
Search engine to find camps. Includes significant sections on camps for all kinds of special needs.

Therapy/Respite Camps for Kids
Information about summer camps that focus on therapy for kids with special needs and/or respite for the kids and their families. Broken down into national categories and regional categories in the United States.