Caregivers

Caregiving is not a role people usually choose. It seems to choose us, emerging from events and circumstances beyond our control. Spinal cord injury, debilitation or sudden illness may come without warning.

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 the right column) connect to several national organizations addressing the concerns of caregivers, including resources for hiring and managing personal care attendants.

A Reeve Foundation Fact Sheet on Caregivers PCAs Respite (PDF)

CaringRoad.comCaringRoad.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. An online community of family caregivers.

Caregiver.comOffers a directory of support groups for caregivers.

The Caregiver InitiativeA project of the Johnson & Johnson Consumer Products Company to help family caregivers provide care to their loved ones and reduce their own stress. Includes information on caregiver needs, and training materials for family caregivers.

The Family Caregiver AllianceThe 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.

Family Caregiving: It's Not All Up to YouNFCA and the National Alliance for Caregiving launched a public education campaign to give information and support to caregivers.

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.

Red Cross Family Caregiving ResourcesInformation for caregivers.

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

Well Spouse AssociationA 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.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

FREE: a comprehensive information tool for people affected by paralysis and for those who care for them. In English and Spanish. Request your copy. Read the online version.

Check out programs in your area on our one-of-a kind online searchable Quality of Life program database. You can search by location or topic. GO

The information provided in the Paralysis Resource Center was supported by Grant/Cooperative Agreement Number 1U59DD000338 from the Centers for Disease Control and Prevention (CDC). The contents are solely the responsibility of the authors and do not necessarily represent the official views of CDC.