Patient Caretaker Guide: Resources to help family, friends, and others who give care

Having a loved one diagnosed with cancer is often an overwhelming experience. For many, life is changed completely. For family and friends, this can also mean more responsibility is needed to help support your loved one.  Caregivers are an essential part of the whole cancer care support team. Many people can feel thrown into a caregiver role and feel lost on how to navigate this complex new world. 

We've designed this Cancer Patient Caretaker Guide in order to help family and friends navigate the complicated issues cancer caregivers face. Within this guide, you will find information on how to support a loved one and yourself, obtain a better understanding of the healthcare team, and learn about other supportive resources. In addition, you will find helpful worksheets to keep track of vital details.  

As always, your Compass team remains available for any questions or concerns. Click below to view a digital copy of the Patient Care Taker Guide. 

Caretaker Resources

Mobile Apps

• Organizing/ Monitoring:

  • CareZone - "Health Info Organizer," CareZone helps caregivers keep track of medical information by organizing medication, allergies, insurance cards, and ID cards all in one place. Through the mobile app, caregivers can also create to-do lists to keep track of appointments and medication times. The app also curates news relevant to your loved one's illness, disability, or condition.

  • LivingWith: build a circle of support, organize help for daily tasks, share how you’re feeling, keep important information from MD visits, write down questions, organize test results, labs, and medications in one spot

  • Cancer.net App: track symptoms, medications and note questions for your healthcare team and access information from cancer.net regarding different cancer diagnoses and treatments

• Caregiver Support:

  • 211info – resources for health and social services in Oregon/Southwest Washington

  • Alzheimer’s Caregiver Buddy: Support for caregivers with daily routine, communication, behaviors, how to deal with wandering, bathing, meals

  • First Aid by American Red Cross- First aid and CPR.

  • iTunes: Caregiving podcast network

  • iTunes: caregiver SOS

  • iTunes: Happy, healthy caregiver 

• To Hire a Caregiver:

  • Care.com- helps you find temporary, qualified care for your loved ones — including caregivers specializing in the needs of people with disabilities and aging populations

Books

• The Caregiver Helpbook by Marilyn Cleland and Vicki Schmall, 2013- ISBN-13: 978-0615856100

• Who Says Men Don’t Care? Gambone, James, Ph.D., Rhonda Travland, MS, 2011

• Passages in Caregiving by Sheehy, Gail, Harper Collins, 2010

• Start with Gratitude: Daily gratitude journal, 2018

Brochures

• American Cancer Society Caregiver Resource Guide: https://www.cancer.org/treatment/caregivers/caregiver-resource-guide.html

• ASCO Answers Caregiving: https://www.cancer.net/sites/cancer.net/files/asco_answers_guide_caregiving.pdf

• City of Hope Communication Guide for Caregivers: https://clinicalcc.files.wordpress.com/2015/06/download.pdf

Websites

• Tools for Caregivers: http://www.powerfultoolsforcaregivers.org/

• Family Caregiver Alliance: https://www.caregiver.org
  A public voice for caregivers. Our pioneering programs, information, education, services, research, and advocacy support & sustain the important work of families nationwide caring for loved ones with chronic, disabling health conditions.

• AARP: https://www.aarp.org/caregiving/
  Dedicated to enhancing the quality of life for all as we age. We lead positive social change and deliver value to members through information, advocacy and service.

• Eldercare Locator: https://eldercare.acl.gov

• National Alliance for Caregiving: https://www.caregiving.org/
  Dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregivers.

• National Family Caregiver Support Program: https://acl.gov/programs/support-caregivers/national-family-caregiver-support-program
  This organization educates, supports, empowers, and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships, and life stages to address the common needs and concerns of all family caregivers.

• Caregiver Action Network: https://caregiveraction.org/

• Family Caregiver Council: http://familycaregivercouncil.com/

• ARCH National Respite Network: https://archrespite.org/

• Online Caregiving Community: https://www.caregivers.com/

• WA State DSHS Caregiver resources: https://www.dshs.wa.gov/altsa/home-and-community-services/caregiver-resources

• Caregiver Support in Oregon: https://adrcoforegon.org/consite/explore-caregiver-supports.php

• Well Spouse Association: https://wellspouse.org
  A national, not-for-profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Well Spouse support groups meet monthly. Here, our members can share their thoughts and feelings openly with others facing similar circumstances in a supportive, non-judgmental environment. WS support groups are also an excellent source for information on a wide range of practical issues facing spousal caregivers.

• This is Living with Cancer

• The Consumer Consortium on Assisted Living (CCAL): The only nonprofit consumer-based organization nationwide focused on the needs, rights, and protection of assisted living consumers, their caregivers & loved ones.

• Rosalynn Carter Institute for Caregiving (RCI): Works to establish local, state, and national partnerships committed to building more effective long-term care systems and providing greater recognition and support for America's unsung heroes - the millions of caregivers, both family and professional, who provide us all with models of selfless service and hope for the future.

Above are links to websites containing information for people living with cancer or a blood disorder/disease. The content provided through these links is not the information of Compass Oncology or US Oncology, Inc., and Compass Oncology does not necessarily endorse such content. In addition, all content provided through these links is for information only and does not constitute medical advice. Please consult your physician before acting or relying upon such information.