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Caregiver Resources

November is National Family Caregivers Month
In honor of you, the tireless caregiver, who devotes your time to care for another, we put together this list of caregiver resources. We hope that they will help you with your work and help you take care of yourself as well.

Caregiver's Creed

  1. I take care of myself.
  2. I accept that caregiving includes the full spectrum of emotions, and these are valid and normal.
  3. I ask for help and accept it willingly.
  4. I seek information that will empower me.
  5. I respect the preferences of my loved one.
  6. I accept that change is a natural part of caregiving.
  7. I celebrate the small successes and allow myself to grieve the disappointments.
  8. I am mindful of my needs and guard my rights as a caregiver.
  9. I forgive myself my shortcomings.
  10. I congratulate myself for the effort and love I put into caregiving.
  11. -- American Brain Tumor Association Webinar
“There are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.”

– Rosalynn Carter

Web Resources by Topic

Click below to view topics
Caring for a Loved One with Cancer - Caring for a person with cancer can be physically and emotionally demanding. The American Society of Clinical Oncology has prepared this comprehensive report, which offers guidance on caregiving at home and in a medical facility, and on taking care of the caregiver.

10 Tips for Family Caregivers - The Caregiver Action Network offers 10 specific suggestions for the caregiver including seeking help, avoiding depression, communicating effectively, and putting legal documents in order.

Resources for Family Caregivers - The home page of the Caregiver Action Network   offers links to articles and videos on caregiving. This site features the latest news and a caregiver help desk, which provides free support to family caregivers across the country.

16 Ways to Support Someone with Cancer - When a loved one is diagnosed with cancer, you may have a million questions running through your head. How should I react? What should I say? How can I help? This Caring Bridge web page provides answers provided by their community of caregivers.

8 Things I Learned as a Pediatric Cancer Caregiver - Practical advice from a mother and caregiver that helped her through difficult days.

Support for Families with a Pediatric Cancer Patient - When a child or teen is diagnosed with cancer the entire family is thrown into crisis mode. The American Childhood Cancer Organization provides a 24-hour online peer support group, coping strategies, books, and education.

Medical Information and Checklist - People with chronic diseases or disabilities take more medications than any other group of patients. With the number of medications some patients take, the issue of medication management can easily become overwhelming. This page provides a convenient checklist.

Caregiving Resources from the American Brain Tumor Association - A brain tumor diagnosis is a life-changing event, not only for the person with the tumor but also for family members and other loved ones. The American Brain Tumor Association  offers resources that can help you feel connected and can help you cope. These resources include a downloadable caregiver handbook, an online support group, and a peer-to-peer mentor program.

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.

ENDBRAINCANCER INITIATIVE | CHRIS ELLIOTT FUND

Enhancing patient outcomes by expanding FDA-approved treatment modalities and fueling research in the pharma/bio/life sciences, device & diagnostic industries and by closing the existing GAP from initial diagnosis to IMMEDIATE AND EXPANDED ACCESS to specialists, researchers, advanced & innovative treatments, clinical trials and critical care with the ultimate goal of improving patient outcomes through updating and improving WHO & NCCN Guidelines and clinical practices related to Standard of Care for brain cancer patients.

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