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Spinal Cord Injury Paralysis Resource Center

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Caregivers

CaregiverCaregiving 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 Resources tab will connect you to several national organizations addressing the concerns of caregivers, including resources for hiring and managing personal care attendants.

Caregiver Chronicles
This series of videos above features interviews with caregivers, each of whom has a partner with some form of paralysis. Each caregiver's situation is different. Each has a unique set of challenges, hopes, strengths and solutions. The first three videos were produced recently in cooperation with Direct Health Media, a Bay Area non-profit foundation. The other videos were produced by DHM, funded in part by a Reeve Foundation Quality of Life grant.

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

A Reeve Foundation Fact Sheet on Mindfullness (PDF)

A Reeve Foundation Fact Sheet on New Injury Top 10 Questions (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.

Family Caregiver AllianceCaregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers.

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.

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

National Family Caregiver Association (NFCA)The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.

National Alliance for CaregivingThe Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family care giving issues, work to strengthen state and local care giving coalitions, and represent the US care giving community internationally.

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.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

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.

ASK OUR EXPERTS
  • Email our Paralysis Information Specialists
  • Call our Paralysis Information Specialists
  • Call our Paralysis Information Specialists
  • Newly paralyzed or spinal cord injured? Start here.
Get your free copy of the Paralysis Resource Guide
Paralysis Resource Guide

This FREE 442 page book is a comprehensive information tool for individuals living with paralysis and for their caregivers. Request or download your copy now!
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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 Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.