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Things to Know: Caring for Someone at the End of Life

This overview offers basic things to know about end-of-life caregiving. Every caregiver’s experience is personal, but this sheet addresses some common questions, including:

  • What does a caregiver do?
  • What can you expect?
  • What kind of support can help?
  • How can conversations help?
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Caring for Yourself While Caregiving

This tip sheet suggests what you can think about, ask, and do to care for yourself while caring for someone nearing the end of life. Though it can be challenging, self-care is an important part of caring for others.

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Taking Control of Caregiving

This tip sheet offers ideas about how to understand and plan for legal, financial, and other matters while caring for someone at the end of their life. Being prepared can help you feel more in control.

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Communicating as a Caregiver

This sheet provides tips on communicating as a caregiver of someone nearing the end of life. Honest conversations can be opportunities for learning, relief, and support.

 

End-of-Life Caregiving Resources

Called to Care® (Johns Hopkins Medicine)
Prepares and supports those caring for loved ones through events, groups, and more

Caregiver Support Groups (Family Caregiver Alliance)
Online communities and support networks

Caring for the Caregiver (National Hospice and Palliative Care Organization)
Taking care of one’s own mental and physical health

Caring for Yourself When Caring for Another (Center for Disease Control and Prevention)
Maintaining self-care while caregiving

Your Healthiest Self: Wellness Toolkits (National Institutes of Health)
Your Surroundings, Your Feelings, Your Body, Your Relationships, Your Disease Defense

Communication Tips for Caregivers (American Heart Association)
Tips on connecting with family, friends, colleagues, and professionals

Conversation Guides (The Conversation Project®)
Free guides on talking about wishes for care through the end of life

Questions to Ask Your Doctor about Advanced Cancer (National Cancer Institute)
Sample questions about cancer, treatments, symptoms, and care options

Talking about Death and Dying (Dying Matters)
Practical guidance and resources on how to share, listen, and say goodbye

Talking to Your Doctor (National Institutes of Health)
Videos and information to help prepare for appointments and conversations with health providers

Eldercare Locator (Administration for Community Living)
Free service connecting older adults and caregivers with local support

Family Care Navigator (Family Caregiving Alliance)
Helps family caregivers find public, nonprofit, and private services nearest their loved one

Home Care and Hospice Agency Locator (National Association for Home Care & Hospice)
Database of more than 33,000 care agencies, searchable by city and state or zip code

Palliative Care Provider Directory (Get Palliative Care)
Search by address, zip code, or city and state to find local providers

VA Caregiver Support (US Department of Veterans Affairs)
Includes the Program of Comprehensive Assistance for Family Caregivers

End-of-Life Care for People Who Have Cancer (National Cancer Institute)
Having conversations, when to use hospice care, and caregiver awareness items

Hospice Care and Resources for Caregivers (Hospice Foundation of America)
What caregivers can do for loved ones and how hospice can help

Palliative Care Basics (National Institute of Nursing Research)
Plain language answers to common questions

Providing Care and Comfort at the End of Life (National Institute on Aging)
Providing physical comfort, planning ahead, and managing mental health and spiritual needs

Providing Physical and Comfort Care (National Hospice and Palliative Care Organization)
Tips and sample questions around giving different aspects of care

Caregiver Learning Center (Family Caregiver Alliance)
Online education community offering articles, training, and classes

Caregiving Care Plan Form (Centers for Disease Control and Prevention)
Summarizes a person’s health conditions, treatments, and wishes

Family Caregiver Toolbox(Caregiver Action Network)
Tips, checklists, videos, and guides to caregiving topics

Planning for the Caregiver (National Cancer Institute)
Tips specific to caregivers of patients with advanced illness

Portable Medical Orders (POLST)
How to formalize specific wishes as medical orders

Preparing for Giving Care (National Hospice and Palliative Care Organization)
Decision making, getting organized, home safety, and quality of life

Local Medicare Counseling (State Health Insurance Assistance Program)
Assistance navigating complexities of Medicare

Medicare Hospice Information (Centers for Medicare & Medicaid Services)
Definitions, data, and benefit information

Medicare’s Low Income Subsidy Toolkit (National Alliance for Caregiving)
Virtual toolkit to help make family caregivers aware of prescription drug assistance for eligible Medicare Part D beneficiaries

Medicaid Self-Directed Services (Centers for Medicare & Medicaid Services)
Options around hiring a family member to provide care

Paying for Hospice Care (Hospice Foundation of America)
Overview of insurance coverage, benefit periods, and charity care

 

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