The following information about support and resources may be useful to professionals and others facing the challenges of caregiving for those who have a terminal illness. We encourage you to contact us with your comments and suggestions for additions to this list. Please contact these organizations directly for information about their services.

Counseling and Group Support for Caregivers

Having access to a counselor or support group can be an important part of self care.

Kara's Professional Caregivers Group affords professionals (nurses, physicians, social workers, therapists and others) a safe and nurturing environment to do peer-supported grief work. It is also a place to bring questions and concerns about grief and how to help others through tragedy and loss.

Kara's 1-1 Adult Counseling is available for those caring for loved ones, family and friends.

Books

Book reviews by Kara staff, volunteers and clients are available by clicking on this link: Kara Book Reviews.

Books about caregiving are available through Amazon.com, with a percentage of all purchases coming back to Kara. Just click on the link below.

Amazon Books about Dying, Death and Caregiving

Articles

Family Caregiving: Documents, Money, and Scams - Putting It All Together
by Elinor Ginzler, Source: AARP, March 2009

Scam Alert: A Dead Debt? Bill collectors prey on grieving families
by Sid Kirchheimer, Source: AARP, March 2009

Search Grief Websites

We've created a customized Google search capability for over 250 selected grief-related websites from agencies and professionals nationwide. Just enter your search word or phrase below and click the 'Search' button. Please use this Contact Form, if you'd like to contribute websites that you think should be added.

Caregiver Support

ABLEDATA provides objective information on assistive technology and rehabilitation equipment available from domestic and international sources to consumers, organizations, professionals, and caregivers within the United States.

CaringBridge - Free, personalized websites that support and connect loved ones during critical illness, treatment and recovery including: a patient care journal to update family and friends; guestbook for messages of love; photo gallery.

Family Caregiver Alliance - Programs to support and sustain families caring for loved ones with chronic, disabling health conditions.

Family Caregiving Center is dedicated to improving dementia care by supporting family centered care. Our mission is to support family life through the entire course of the illness through innovative services and educational offerings.

Find Your Local Caregiver Resource Center (CRC) - Each CRC offers a full complement of family services designed to assist caregivers. Multi-lingual staff are available at some CRCs to serve diverse caregiver populations.

Link2Care - Online resource for Californial Caregivers.

Lotsa Helping Hands is a simple, immediate way for families facing the challenges of long-term caregiving or caring for an aging loved one to organize and communicate with other family members, friends, and neighbors.

The National Alliance for Caregiving is dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregivers.

National Family Caregivers Association - Educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age.

Partnership for Parents - A support network for parents of children with serious illnesses.

Terry Wise - Caregiving and grief support resources. Terry is a nationally known speaker and author of "Waking Up: Climbing Through the Darkness."

Well Spouse Association - A national, not for profit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled.

 

Disease Specific Websites

ALS Association - Information, education and advocacy for amyotrophic lateral sclerosis (Lou Gehrig's desease).

Alzheimer's Association - Offers updated reseach information, chapters, caregiver information and policy background.

Alzheimer's Disease Education and Referral (ADEAR) Center - help finding current, comprehensive Alzheimer's disease (AD) information and resources from the National Institute on Aging (NIA).

American Health Assistance Foundation (AHAF) funds research into cures for Alzheimer’s disease, macular degeneration and glaucoma, and provides the public with information about risk factors, preventative lifestyles, available treatments and coping strategies.

Creutzfeldt-Jakob Disease Foundation - research and information.

Hydrocephalus Association - Information, support, publications/products, physician directories, events.

National Multiple Sclerosis Society - Living with MS, research, online community, news, chapters, multimedia library, information/events for professionals.

National Parkinson Foundation - Individual and professional information about: Parkinson's Disease, events, grants, publications, resources.

Stroke Center - Information about stroke care and research offered by the Washington University School of Medicine.

SAFE (Stroke Awareness for Everyone, Inc.) - An international Internet-centered coalition of stroke survivors and their families, in addition to doctors, nurses and therapists involved with stroke.

 

Elder Care

Benefits CheckUp - A Service of the National Council on Aging providing information about the many public programs available to seniors in need and how to apply for them.

Elder Hope - Support for aging, dying and grieving.

ElderWeb - Review of aging and long-term care related news.

Health and Aging

ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world, sponsored by the National Library of Medicine.

healthfinder.gov - Reliable health information sponsored by the U.S. Department of Health & Human Services.

MedicineNet.com - Includes information on diseases and conditions, symptoms, procedures and tests, medications, health and living, news, medical terms dictionary.

Medscape - Medical and drug information for both health professionals and consumers, sponsored by WebMD.

National Center for Complementary and Alternative Medicine - the Federal Government's lead agency for scientific research on complementary and alternative medicine.

Rx Help for Californians - Helps low-income, uninsured California residents get access to patient assistance programs where they may qualify for free, or nearly free, prescription medicines.

 

Locating Community Services

California Advocates for Nursing Home Reform - Includes information about finding a nursing home, publications, reports/studies, residential care, assisted living and legislation.

California Association for Adult Day Services - Includes a listing by county of adult daycare centers, and basic infomation about services and cost.

California Registry is a state licensed free referral agency for seniors and their families. We have been providing seniors with care options, counseling, referrals and facility evaluations free of charge since 1939. Help in locating a quality care facility with up-to-date information on over 8,100 facilities within California.

CareGuide@Home - Provider of elder care managers and other related services nationwide.

Eldercare Locator - A public service of the U.S. Administration on Aging, Eldercare Locator is the first step to finding resources for older adults in any U.S. community.

Hospice Foundation of America offers help to those who cope personally or professionally with terminal illness, death, and the process of grief (Locate a Hospice, Newsletter, FAQ, Publications and Videos).

National Respite Locator Service is an ARCH National Resource Center initiative to help caregivers and professionals locate respite services in their community.

 

State and Federal Government Agencies

Centers for Medicare & Medicaid Services (CMS) - gives information on Medicare & Medicaid programs, consumer information and a comparison of local plans.

Medicare - The official US site for people with Medicare.

Medicare Rights Center - A national non-profit, non-governmental organization that helps older adults and people with disabilities get good affordable health care.

The National Institute of Mental Health (NIMH) - Posts current studies, clinical trials and information on mental health related initiatives including depression and dementia.

Social Security Online - Official website of the U.S. Social Security Administration includes benefit information, Personal Earnings and Benefit Estimate Statement.

The State of California - State departments including Health.

U.S. Administration on Aging - Older American Act programs information including statistics on older adults, National Family Caregiver Support Program.

USA.gov - Official information and services from the U.S. government including caregiver resources, end-of-life issues, agencies for seniors, health for seniors.

U.S. Department of Veterans Affairs - Benefits, facilities, special programs.

 

Education & Training for Caregiving Professionals and Volunteers

Center for Loss and Life Transition - Books, articles and other resources for those who are grieving - educational and training for bereavement caregivers.

Metta Institute - Educational programs for professionals, integrating the spiritual dimensions of living, dying, caregiving and transformation.

Contact Us

457 Kingsley Ave
Palo Alto, CA 94301
650-321-5272

Office hours are M-F, 9AM to 4PM Pacific time.
Here is a map to our office.

Kara is the Gothic root of the word "care."
It means to reach out, to care, to lament, to grieve with.