Parents and Family Members as Caregivers


The Caregiver Action Network (CAN) aka the Rare Caregivers Network
The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

Caregiver Resource Network
Shared caregiver stories, respite care information, wellness for the caregiver and other helpful links for caregivers

Children’s Hospice and Palliative Care Coalition


“Caring for Children Who Have Severe Neurological Impairment – A Life With Grace” by Julie M. Hauer, M.D.  Johns Hopkins Press Health Book.

This comprehensive guide provides detailed descriptions of caring for a child with severe healthcare challenges, including pain management, sleep difficulties, feeding concerns and respiratory problems.  Tables and key points are easily accessible for quick reference.  The author also provides case studies and examples so the reader can learn how different families approach decision making.