RESOURCES FOR CAREGIVERS

Patient and caregiver

Looking for tools to help you care for a loved one? See below for a wealth of resources to address the many issues you face as a PH caregiver, including caring for a chronically ill family member, coping as a family, financial and legal management, and finding time for yourself!

General | Caring for a Spouse or Partner | Caring for a Child | Financial, Insurance and Legal Assistance | Useful Tools

also see Patient Resources

General Caregiving Resources

  • AARP offers tips and advice to help make your life as a caregiver easier.
  • Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), provides information for caregivers about providing physical care and comfort for your loved one, caring for yourself, financial information, advance care planning, tips for getting organized and caring for a child with a serious illness.
  • Family Caregiver Alliance offers programs at the national, state and local levels to support and sustain caregivers, and quick tips and FAQs about relevant caregiving topics. Its Family Care Navigator provides links to relevant state-by-state resources.
  • Family Caregiving 101 provides family caregivers with the basic tools, skills and information they need to protect their own physical and mental health while they provide high-quality care for their loved ones.
  • The Federal Government lists resources for caregivers about government benefits, legal issues and caregiver support.
  • Medline Plus’ resources for caregivers address a range of topics including how to cope with stress and burnout, financial issues, relevant research, statistics on caregiving and more.
  • The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. Its resources for caregivers provide helpful information on training yourself to be a caregiver, financial and legal assistance, direction on where to turn for help and quick tip sheets.
  • The National Family Caregivers Association educates, supports and empowers those who care for loved ones with a chronic illness, disability or the frailties of old age. Their article, Family Caregivers and Chronic Illness: How to Help Your Loved One and Yourself (PDF), addresses topics like communication, home safety and becoming more comfortable in your role as a caregiver.

Caring for a Spouse or Partner

Caring for a Child

  • AboutKidsHealth provides resources for families who care for chronically ill children, with a special focus on heart conditions, and includes fun pages for kids.
  • Athealth.com discusses issues that can arise between siblings when one child suffers from a disability.
  • KidsHealth offers advice to parents caring for chronically ill children on a range of topics including communicating with your child, addressing emotional issues, dealing with healthy siblings and managing your child’s care. It also features sections for kids and teens.
  • The Children’s R.A.R.E. Disease Network creates greater public awareness for rare disease, while connecting, educating and empowering the families and caregivers affected, through an online community and collaborative portal.
  • Starlight Children’s Foundation is dedicated to improving the quality of life for children with chronic and life-threatening illnesses by providing entertainment, education and family activities that help them cope with the pain, fear and isolation of prolonged illness.
  • The University of Michigan Health System explains how children of various ages cope with chronic illness and how disability can impact the entire family.

Financial, Insurance and Legal Assistance

Other Useful Tools

  • CaringBridge allows caregivers and patients to create free, personalized websites to connect with friends and family during a serious health event.
  • Lotsa Helping Hands is a web-based caregiving coordination service that allows family, friends, neighbors and colleagues to create a community and assist with the daily tasks that become a challenge when caring for a loved one.
  • Medline Plus’ resources for caregivers address a range of topics including how to cope with stress and burnout, financial issues, relevant research, statistics on caregiving and more.
  • National Caregivers Library, powered by Family Care America, includes hundreds of useful articles, forms, checklists and links to topic-specific resources for caregivers and employers.
  • The California HealthCare Foundation addresses the role of family in caring for an individual with a chronic illness. 
  • The Caregiver's Handbook (from Modern Maturity and made available on the web through San Diego County Mental Health Services) includes checklists for the care-receiver and caregiver, common problems, available help, caring for the caregiver, information on keeping medical records and more.
Disclaimer: The Pulmonary Hypertension Association does not own, control or endorse any of these sites and is not responsible for their content.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.