Resources for Caregivers
MDA honors family caregivers for their tireless support and dedication during National Family Caregivers Month in November and all year-round. It’s through your devotion and commitment that our MDA families receive the care and attention they need. From MDA, we say THANK YOU for all you do to help support and empower children and adults living with muscular dystrophy, ALS and related life-threatening diseases.
Related Guidebooks
Duchenne Guide for Families
The Duchenne Guide for Families is a practical roadmap for those living with DMD and their families. The guide provides readers the information they need to understand Duchenne and the many considerations that are a part of living with this disease.
MDA Guide for Caregivers
Tips and information for caregivers of an individual with a neuromuscular disease.
A Teachers Guide to Neuromuscular Disease
An excellent resource for teachers who have students with neuromuscular diseases, and a helpful guide for parents navigating educational advocacy issues.
Related Articles
Forbes Magazine article outlining financial options for providing for an adult or child living with a disability. To read more, follow this link.
Caregiver Burnout: Symptoms and How to Avoid Them
Caregiving: Choosing with Care (October 2017)
The Heart of Care (October 2016)
My Brother's (or Sister's) Keeper (October 2015)
Caring for the Caregivers (October 2014)
Walking the Line Between Caregiver and Life Partner (November 2013)
More online resources
Here is a listing of national online resources to help you and your caregiver as you move forward in your journey with muscular dystrophy, ALS and related muscle-debilitating diseases.
BenefitsCheckUp
Identifies programs to help pay for prescription drugs, food and health care.
Caregiver Resource Network
Caregiver stories, respite care information, caregiver health and wellness, and a listing of links to other online resources for caregivers.
Family Caregiver Alliance
The Medicare site provides a caregiver-specific section, offering a caregiver’s guide, assistance with billing and navigating Medicare, and other care options.
Eldercare Locator
Provides a state listing of Aging Resource offices that offer local assistance to caregivers.
Offers articles relating to legal matters, housing and transportation issues, end-of-life decisions, care facilities and more.
National Family Caregivers Association
Site includes news and resources to support and educate caregivers.
National Respite Network
Use the locator tool to find state and local respite services.
Share the Care
The original model for organizing and maintaining a volunteer caregiving group.
Today’s Caregiver
A digital magazine, resources and caregiver discussion forum.
Well Spouse Association
Support groups, online discussion forums, recommended reading list for caregivers, resource guide and online mentor program.
