With thanks to PN and Sue!!!

The following excerpt has been taken from the Christopher and Dana Reeve Paralysis Resource Center website. www.paralysis.org/Caregivers/CaregiversMain.cfm.
Caregiving is not a role people usually choose. It seems to choose us, emerging from events and circumstances beyond our control.
This is a job that cannot be skirted and cannot always be delegated. It can be difficult, physically and emotionally. It can be time-consuming. While caring for loved ones can be enormously satisfying, there are days, it seems, that offer little reward.
Caregivers, the men and women who care for family members and loved ones, deserve to be recognized and supported for the vital part they play in the lives of people with paralysis.
Caregivers may work in isolation from others in similar circumstances but they share much in common. It is important that caregivers connect with each other, to gain strength and to know that they are not alone.
It is essential that caregivers know about tools -- the homecare products and services -- that might make their jobs easier. It's also important that caregivers are aware of community and public resources that offer assistance.
Caregivers also need to know that support and respite systems exist to address the well-being and health of caregivers themselves.
The caregivers links (click on Recommended Web Sites in upper right of this page) connect to several national organizations addressing the concerns of caregivers, including resources for hiring and managing personal care attendants.
Recommended Web Sites
Caregiver Media Group
Provides information, support and guidance for family and professional caregivers. Publishes Today's Caregiver Magazine and offers a web site with topic-specific newsletters, online discussion lists, chat rooms and an online store.

& www.craighospital.org/sci/mets/careassisthire.asp
Personal Care Attendants
Information from Craig Hospital on finding, hiring and keeping reliable PCAs. From the home page, click on Health and Wellness under the Spinal Cord Injury section, then click on Educational Brochures. Scroll to the Caregiving section.

The 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. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers. More than one quarter (26.6%) of the adult population has provided care to a family member or friend during the past year. Based on current census data, that translates into more than 54 million people.

Well Spouse Foundation (WSF)
A national, not for profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Through information and support groups, the organization address issues common to family caregivers: anger, guilt, fear, isolation, grief, and financial threat.

Hiring and Management of Personal Care Assistants for Individuals with SCI
a downloadable, 26-page booklet from the SCI Project at Santa Clara Valley Medical Center. Covers everything from locating and hiring, to training personal assistants. Includes forms, checklists and resources. (In pdf format).

Missouri Model Spinal Cord Injury System's Enhancing Independence: A Personal Attendant Training Manual
(pdf file) downloadable for free

PCA Guide
Online guide to managing attendants from the Washington Coalition of Citizens with disABILITIES, the Independent Living Service Center in Everett, WA, and the Disability Resource Network in Redmond, WA.

Spinal Cord Injury Caregivers
Yahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.

National Respite Coalition
National Respite Coalition and the National Respite Locator Service help parents, caregivers, and professionals find respite services in their state and local area.

Shepherd's Centers of America (SCA)
An interfaith, not-for-profit organization that coordinates nearly 100 independent Shepherd's Centers across the U.S to help older adults remain independent in their own living situation.

The Center for Family Caregivers
The Center for Family Caregivers and Denise Brown operate Tad Publishing Co., which produces books, newsletters and other materials for families and health care professionals who care for chronically ill or disabled family members.

The Family Caregiver Alliance
The lead agency in California's system of Caregiver Resource Centers and operates the National Center on Caregiving to advance the development of support programs for family caregivers in every state. For residents of the greater San Francisco Bay Area, FCA provides direct support services for caregivers of those with Alzheimer's disease, stroke, traumatic brain injury, Parkinson's and other debilitating brain disorders that strike adults.

The Caregivers Advisory Panel
Collects confidential information on the opinions and needs of family caregivers to help health care products manufacturers and service providers to create innovative products, services, programs and support for America's caregiving families.

CaringRoad.com is dedicated to helping family caregivers obtain information, locate services and find support so they can make informed decisions about the care of their loved ones.

Other Resources

The American Associations of Retired Persons offers various articles on caregiving.

The National Women's Health Information Center has information on caregiver stress.

Caregiver Resources

Please note that most of these resources are not specific to paralysis but are cross-disability in nature.


Barg, Gary. The Fearless Caregiver: How to get the best care for your loved one and still have a life of your own. Sterling, VA: Capital Books, 2001.

Capossela, Cappy and Sheila Warnock. Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill. New York: Fireside, 1995.

Cohen, Marion Deutsche. Dirty Details: The Days and Nights of a Well Spouse. Philadelphia: Temple University Press, 1996. (multiple sclerosis)

DeGraff, Alfred H. Caregivers and Personal Assistants: How to Find, Hire and Manage the People who Help You (or Your Loved One!). 3rd ed. Fort Collins, CO: Saratoga Access Publications Inc., 2002.

Drattell, Alan. The Other Victim: How Caregivers Survive a Loved One's Chronic Illness. Santa Ana, CA: Seven Locks Press, 1996. (multiple sclerosis caregivers' stories)

Holicky, Richard. Taking Care of Yourself While Providing Care: A Guide for those who assist and care for their spouses, children, parents, and other loved ones who have spinal cord injuries. Englewood, CO: Craig Hospital, 2000. Call 303-789-8202 to order for $5.00.

Ilardo, Joseph and Carole R. Rothman. I'll Take Care of You: A Practical Guide for Family Caregivers. Oakland, CA: New Harbinger Publications, 1999.

McLeod, Beth Witrogen. And Thou Shalt Honor: The Caregiver's Companion. Rodale Press, 2002.

McLeod, Beth Witrogen. Caregiving: The Spiritual Journey of Love, Loss, and Renewal. New York: John Wiley & Sons, 1999.

Meyer, Maria M. and Paula Derr. The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers. Portland, OR: CareTrust Publications, 1998.

National Family Caregiver Association. The Resourceful Caregiver: Helping Family Caregivers Help Themselves. St. Louis, MO: Mosby-Year Book Inc., 1996.

Nieboer, Laura. Home Care Organizer For Families Providing Home Care. Washington, DC: State of the Art Inc., 1997.

Shannon, Joyce Brennfleck. Caregiving Sourcebook. Detroit: Omnigraphics. 2001.

Strong, Maggie. Mainstay: For the Well Spouse of the Chronically Ill. Northampton, MA: Bradford Books, 1997.

Thompson, Gretchen. God Knows Caregiving Can Pull You Apart: 12 Ways to Keep it All Together. Notre Dame, Indiana: Sorin Books, 2002.

Wolgin, Francie. Advanced Skills and Competency Assessment for Caregivers. Upper Saddle River, NJ: Prentice-Hall, 1998.

-This book gives instructions on procedures such as urinary catheterization and tracheostomy care.

Print Magazines

Mainstay-a quarterly newsletter from The Well Spouse Foundation. Email mainstay@wellspouse.org for more info.

Take Care!-a quarterly newsletter from the National Family Caregivers Association www.nfcacares.org

Today's Caregiver-Published 6 times a year by Caregiver Media Group, see www.caregiver.com to subscribe

Email or Online Newsletters

Caregiver.com Newsletter-free newsletter sent once a week via email. Go to www.caregiver.com to subscribe.

Family Caregiver Alliance Update-free newsletter readable at site www.caregiver.org/newsletter.html Also see their Fact Sheets readable online.

Web Resources:

Share the Care

Long-Term Caregivers:

article specific to spinal cord injuries from Craig Hospital LINK TO CRAIG ARTICLE

article specific to spinal cord injuries from Craig Hospital

Caregivers for SCI: Spinal Cord Injury Infosheet #17 from the University of Alabama-Birmingham

NSCIA website section on caregiving: Spinalcord.Org

Muscular Dystrophy Association's online book on ALS caregiving:


& Thou Shalt Honor...Caregiving. Wiland-Bell Productions. 2 hours. www.thoushalthonor.org

How to Help Someone Who Uses a Wheelchair Without Hurting Yourself. (Caregiving Series Vol. 2) Healing Arts Communications. 24 minutes. Can be purchased from Program Development Associates 1-800-543-2119.

Caring for the Caregiver. Program Development Associates. 28 minutes. Can be purchased from PDA at 1-800-543-2119.

This video helps the caregiver so that they don't neglect their own health.

The Educated Caregiver: A Comprehensive Guide for Caregivers and Their Families. LifeView Resources. A three video series: Coping Skills, Hands-On Skills, and Essential Knowledge. Available from Caregiver Media Group at www.caregiver.com

Covers everything from coping with the emotional challenges of caregiving to patient transfers and preventing bed sores.

Please contact the Christopher and Dana Reeve Paralysis Resource Center at 800-539-7309 or visit our website (www.paralysis.org) for more information and resources.

Posts: 1310 | From: Rolling Hills Est., CA, USA | Registered: 07-30-01
Sue Pendleton


posted 04-08-04 12:00 AM
Spinal Cord Injury Caregivers
Yahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.

As one of the moderators (kind of parttime these days) Marie Potts has put together a fantastic list! Files that can be downloaded with information state by state on what is available in benefits, how to get back to school, get a job and sometimes to kick someone in the butt. We also ask a series of questions so no spammers or pretenders, devottees or wannabees show up. If they do they have to get past a questionaire that we only ease up on for some foreign speaking members and then most of us can figure out if they are for real or not.
And yes, we often refer medical questions here to CC and some newbies to the Resource Center. But for those who need a break and info we also have a virtual grape juice party on Friday's...

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

[This message was edited by Obieone on 01-23-05 at 09:11 PM.]