Resources for Caregivers

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If you’re one of the 65.7 million Americans responsible for the care of an adult, an elderly person, or a child with special needs, it won’t come as news to you that you’re stressed and exhausted. That’s confirmed by a proliferation of newspaper and magazine articles, books, blogs, and websites on caregiving.

With the demands of a job and a family, caring for someone who is ill or incapacitated leaves little time for self-care—or for research on how best to deal with the added responsibilities.

One 40-something caregiver asks, “Who has time to read when you’re going through all that stuff?”  This from a daughter who is caring at home for her mother with dementia and blogs at The Dopamine Diaries – “candid reflections on dementia caregiving with a holistic bent” .

She continues, “People who have never been caregivers themselves seem to believe that a dry-as-toast textbookish narration of the stark reality of parental care is just what a desperate daughter needs.”

She recommends picking up The Eldercare Handbook by Stella Mora Henry (2006) instead.  

To avoid adding—too much—to the deluge of information, what follows is a select list of resources for caregivers. Inevitably, some are duplicative and some of value have been omitted. If you’re a caregiver, the hope is that one or two of these resources will lead you to the information and encouragement you need to take better care of your loved one—and yourself.

If you’re having trouble accessing a website or finding a book, ask your librarian.

Websites

These websites generally contain links to other references and resources, including support groups.  

AARP

Alzheimer’s Association

Your local Area Agency on Aging

Children of Aging Parents
a nonprofit national organization.

Family Caregiver Alliance, National Center on Caregiving
Information about resources available in each state, ways for caregiver families, friends, and neighbors to be connected via secure web-based networks.

National Alliance for Caregiving

National Caregivers Library
Articles, forms, checklists, and links to resources. Click Free Tools for quick access to the most popular articles, reports, and tools in the library.

National Family Caregivers Association

U.S. Government sites

The Eldercare Locator
A public service of the U.S. Administration on Aging connecting you to services for older adults and their families. “You can also reach us at 1-800-677-1116.”

Caregivers' Resources, at USA.gov.

Nursing Home Compare
Find and compare certified nursing homes at Medicare website, which also provides resources related to caregiving.

Books

Eldercare 911: The Caregiver’s Complete Handbook for Making Decisions
Judith Beerman and Judith Rappaport-Musson, (2002, revised 2008.

The Senior Organizer: Personal, Medical, Legal, Financial
Dorothy Breininger, Lynn Benson and Debby Bitticks, (2006).
Helps assemble your loved one’s important information in a simple format.

Caring for Your Parents: The Complete AARP Guide
Hugh Delehanty and Elinor Ginzler, (2006).

Harvard Medical School Caregiver’s Handbook: A Guide to Caring for the Ill, Elderly, Disabled. . .and Yourself
Anne Fabiny, M.D., Suzanne Modigliani, Julie Corliss, and Matt Holt, (2004, revised 2010).

Stages of Senior Care: Your Step-by-Step Guide to Making the Best Decisions
Paul Hogan, (2009).
Recommended by Dr. Oz.

A Family Caregiver Speaks Up: It Doesn’t Have to Be This Hard
Suzanne Mintz (president and co-founder of the National Family Caregivers Association), (2008).
(Praised by Judy Woodruff, senior correspondent, "The News Hour with Jim Lehrer." )

Passages in Caregiving: Turning Chaos into Confidence
Gail Sheehy, (2011).
By the award-winning author of Passages: Predictable Crises of Adult Life. Reviewers found her narrative and journalistic style appealing and the references useful. Others said they felt a disconnect between their own limited caregiving resources and Sheehy’s (e.g., hiring a home aide).

Disclosure and acknowledgement. I have never been a caregiver. Diane Moore of Ventura, California, shared with me the annotated bibliography of the first-person guide  she is completing about caregiving for her mother with dementia.

Louise Kertesz has been a health care business writer and editor for more than 20 years, on staff at publications including Business Insurance, Modern Healthcare, and AHIP Coverage.  She now writes and edits freelance for a number of organizations and publications.

Photo credit: Loving Hands by sparkle glowplug.