Communities of Support
It is not always easy to ask for help or keep up with your network of support, even when you need them most. But you and your family don’t have to face challenges alone. The National MS Society has developed collaborative partnerships with two organizations whose sole missions are to reduce the feelings of isolation you and your family may experience during times of medical crisis.
- Lotsa Helping Hands--When Family and Friends Need Help
Lotsa Helping Hands is a free web-based service that allows family, friends, neighbors, and colleagues – the community circle of a person with MS – to more easily assist with household tasks that can become a burden during times of medical crisis. It’s an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis, or family caregiver exhaustion. It’s also a place to keep these ‘circles of community’ informed with status updates, photo galleries, message boards, and more.
- CaringBridge--Maintaining Connections
CaringBridge is a free one-stop shop that connects and updates communities of supporters on a person’s ongoing health status, treatment, surgeries, progress in therapies and recovery. A personalized CaringBridge website helps keep loved ones informed during difficult times. In return, family and friends give support through guestbook messages.
A personalized CaringBridge website allows families to:
--Journal about their treatment and recovery
--Ask for help with meals and transportation
--Receive love and support from family and friends
Every personalized CaringBridge website includes:
--Patient care journal
--Guestbook for messages
--Free online support for using the service
Caregiver Support Organizations
Family Caregiver Alliance
Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. Long recognized as a pioneer in health services, FCA now offers programs at national, state and local levels to support and sustain caregivers.
National Alliance for Caregiving
The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. The Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family caregiving issues, work to strengthen state and local caregiving coalitions, and represent the US caregiving community internationally. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance's mission is to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients.
Well Spouse Foundation
The Well Spouse Association, a nonprofit 501(c)(3) membership organization, advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner. They offer peer to peer support and educate health care professionals and the general public about the special challenges and unique issues "well" spouses face every day.
Caregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers. Founded in 1995, we produce Today's Caregiver magazine, the first national magazine dedicated to caregivers, the "Sharing Wisdom Caregivers Conferences", and our web site, caregiver.com which includes topic specific newsletters, online discussion lists, back issue articles of Today's Caregiver magazine, chat rooms and an online store. Caregiver Media Group and all of it's products are developed for caregivers, about caregivers and by caregivers.
Strength for Caring
The Johnson & Johnson Caregiver Initiative is a pioneer in the emerging field of family caregiver support and StrengthForCaring.com (SFC) is the cornerstone of this important program. SFC is a comprehensive website designed to provide family caregivers with a broad range of expert content and information, an emerging on-line community, daily inspiration, and much needed support.
National Family Caregivers Association
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.
Department of Veteran Affairs Caregiver Initiatives
The Department of Veteran Affairs (VA) has launched two new exciting initiatives for caregivers of Veterans, with one specifically for caregivers of Veterans with MS:
- The first is the National Caregivers Support Line, a telephone-based information line for family members and loved ones who provide care for Veterans who are living with the effects of war, disability, chronic illness, or aging. Licensed clinical social workers are available to answer questions, listen to concerns and link callers to the Caregiver Support Coordinator at their local VA Medical Center. The support line is open Monday-Friday 8:00 am to 11:00 pm Eastern Time, and Saturday from 10:30 am to 6:00 pm Eastern Time. For more information call 1-855-260-3274 or visit www.caregiver.va.gov.
- The second initiative is a monthly support and education conference call for caregivers of Veterans with MS, where caregivers can connect and share their experiences. In addition to time for networking, educational topics and resources will also be discussed. The group meets the fourth Monday of every month from 8-9 pm ET. The call-in number is 1-800-767-1750, access code 43157#. For more information on this monthly support group please contact the group’s facilitator, Maggie Kazmierski, LCSW-C at 1-800-464-6295, ext. 6095/410-605-7000, ext. 6095 or email Margaret.Kazmierski@va.gov.