Caregiver Resources

Books on Caregiving - During challenging times books can offer practical advice, perspective, and empathy. Suggested reading can be found on our books  page and on our EBCI Bookshop where you can purchase the books.

EBCI Online Caregiving Event Videos - EBCI has hosted a series of online events where caregivers (family, friends, and professionals) have shared their experiences in caring for brain cancer patients. Their stories are inspiring. They also provide practical advice and useful resources.

Navigating Your Role as a Brain Tumor Caregiver - Learning to navigate the new role of caregiver can be overwhelming. This American Brain Tumor Association webinar offers practical tips, strategies, and resources to help you navigate the world of caregiving.

The Podcast: Glioblastoma aka GBM - The Glioblastoma Research Organization produces a series of podcasts featuring insightful chats with all those impacted by glioblastoma, including medical professionals, caregivers, loved ones, and GBM Warriors. 

Caregivers and Depression - Many caregivers, whose lives have been radically and unexpectedly changed by caring for an ill or disabled loved one, slip into depression disorders. The Caregiver Action Network provides this article on the symptoms and treatment of depression.

Tips to Relieve Caregiver Stress - This Caring Bridge web page provides a definition of caregiver stress, its causes and symptoms, as well as tips for managing stress.
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Financial Caregiving Hub - This website, maintained by the Women’s Institute for a Secure Retirement, offers tips to the caregiver on financial planning, employment, advance care planning, government benefits, and elder abuse.

A Guide to Caregiver Finances - Caring for an older loved one is highly rewarding, but it can strain your finances, especially if you use your personal income to cover their medical costs, household expenses, and other fees. Caring.com has developed this guide to tax planning and government benefits that includes a section on talking to your loved ones about money.

Legal and Practical Information for Caregivers - When you're a caregiver for an individual diagnosed with cancer, access to accurate resources about legal and practical matters like taking time off from work, managing family finances and medical bills, replacing lost wages, estate planning, and other matters, can be hard to come by. Triage Cancer provides free materials and resources, including a website, videos, podcasts, and webinars, and one-on-one assistance.

Caregiver Rights and Tools for Veterans with Cancer - In this video, Monica Fawzy Bryant Esq., from Triage Cancer, describes the practical and legal issues that arise after a cancer diagnosis. She discusses the Fair Employment laws, the Americans with Disabilities Act, and the Family Medical Leave Act, which apply to all Americans. Ms Bryant also discusses issues unique to veterans including obtaining cancer care through the VA, and the Promise to Address Comprehensive Toxics (PACT) Act, which expands health care benefits for veterans exposed to toxic chemicals.

Mom and Dad We Need to Talk - Cameron Huddleston, writer and financial planner, discusses her experiences providing care for her mother who had Alzheimer's disease. One important lesson learned is the need for the patient and caregiver to be proactive when dealing with finances and legal issues. This can lead to difficult conversations, but Cameron provides useful tips in this short video  and in her book. She also provides an In Case of Emergency Organizer on the resources  page of her website.

Five Wishes - is a living will (advanced care directive) template that addresses your personal, emotional, and spiritual needs as well as your medical wishes. The sample document provides detailed information.

Devices and Applications - There are a variety of devices and applications designed to help the patient and caregiver adhere to the prescribed medication schedule, coordinate events, and provide a sense of peace for the caregiver.

Organize Caregiving Online - The Lotsa Helping Hands website provides a central place to coordinate meals and help for friends and family. The website and cell phone app provides schedule coordination, communication, and support resources.

Afterwards.Life - Lets someone create legacy messages to be delivered to loved ones at future dates.

Cake - Articles about legacy projects.

My Wonderful Life - Not necessarily for legacy letters, but along these lines. Can be quite helpful to someone planning for their own funeral/memorial.