Comprehensive Hospice Care Resources and Guides

The following links are referenced in many of the articles and are presented here as an overall resource section for you to pursue for your enlightenment. Some links lead to Amazon for book suggestions; you are not obligated to purchase anything.

Table of Contents

Starting Hospice Services

Top 30 FAQs About Hospice: Everything You Need to Know

Understanding Hospice Care: Is it Too Early to Start Hospice?

What’s the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

National Hospice Locator and Medicare Hospice Compare

Advocacy Resources

Natural Death With Dignity: Protecting Your Right To Refuse Medical Treatment

Make Your Own Medical & Financial Power of Attorney: A Step-By-Step Guide to Making a Power of Attorney

Last things first, just in case… The practical guide to Living Wills and Durable Powers of Attorney for Health Care

Death and Dying: A Good Exit Plan

Grieving Resources

On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss

Finding Meaning: The Sixth Stage of Grief

It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand

Need Help Dealing with Grief? GriefShare Grief & Loss Support Groups Are Here for You

Caregiver Resources

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

CaringInfo – Caregiver support and much more!

Surviving Caregiving with Dignity, Love, and Kindness

Caregivers.com | Simplifying the Search for In-Home Care

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Caregiver Support Book Series

My Aging Parent Needs Help!: 7-Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to Organized [Includes Tips for Caregiver Burnout]

Take Back Your Life: A Caregiver’s Guide to Finding Freedom in the Midst of Overwhelm

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

Dear Caregiver, It’s Your Life Too: 71 Self-Care Tips To Manage Stress, Avoid Burnout, And Find Joy Again While Caring For A Loved One

Everything Happens for a Reason: And Other Lies I’ve Loved

The Art of Dying

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

Coaching Resources

Hospice Buddy – run by Jamie Haberman, RN with extensive hospice experience.

Hospice Podcasts to learn more about Hospice

Hospice Explained

Code Status — Full Code (aka give CPR) and DNR resources

The dark side of CPR: Docs say it could be worse than death

Resuscitation is futile in terminally ill patients

CPR and terminal illness: What the public needs to know

CPR’s true survival rate is lower than many people think

Outcomes of In-Hospital CPR: Not as Rosy as Some May Say

CPR on Elderly: Long-term Side Effects of CPR – Potential Complications of CPR – Understanding the Risks – Consequences of Survival After Cardiac Arrest

Psychotherapeutic Considerations for Patients With Terminal Illness (PDF)

CPR Survival Rates – Development and Validation of the Good Outcome Following Attempted Resuscitation (GO-FAR) Score to Predict Neurologically Intact Survival After In-Hospital Cardiopulmonary Resuscitation – Long-Term Outcomes in Elderly Survivors of In-Hospital Cardiac Arrest

Free Advance Directive Forms by State

Living wills and advance directives for medical decisions

Impact of Do-Not-Resuscitate Orders on Nursing Clinical Decision Making (PDF)

Dementia Resources

The Caregiver’s Guide to Cancer: Compassionate Advice for Caring for You and Your Loved One (Caregiver’s Guides)

Cancer Caregiving A-to-Z: An At-Home Guide for Patients and Families

Peace in the Face of Cancer

A Handbook of caring for someone with cancer: Instructions for the Support Person or Caregiver Helping a Loved One Survive Cancer

Co-Surviving Cancer: The Guide for Caregivers, Family Members and Friends of Adults Living with Cancer

Things I Wish I’d Known: Cancer Caregivers Speak Out

How to read and apply the FAST Scale to stage any type of dementia. Dementia Staging Made Easy.

The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease and Other Dementias

Creating Moments of Joy Along the Alzheimer’s Journey: A Guide for Families and Caregivers, Fifth Edition, Revised and Expanded

Caregiver Support Book Series

Dementia Caregiver Essentials: Comprehensive Guide for Dementia Care (one book that contains the ten books below for less than one-third the price of all ten)

The Validation Breakthrough: Simple Techniques for Communicating with People with ‘Alzheimer’s-Type Dementia’

Dementia Home Care: How to Prepare Before, During, and After

Atypical Dementias: Understanding Mid-Life Language, Visual, Behavioral, and Cognitive Changes

The Dementia Caregiver’s Survival Guide: An 11-Step Plan to Understand the Disease and How To Cope with Financial Challenges, Patient Aggression, and Depression Without Guilt, Overwhelm, or Burnout

Fading Reflection: Understanding the complexities of Dementia

Dementia Caregiving: A Self Help Book for Dementia Caregivers Offering Practical Coping Strategies and Support to Overcome Burnout, Increase Awareness, and Build Mental & Emotional Resilience

Navigating the Dementia Journey: A Compassionate Guide to Understanding, Supporting, and Living With Dementia

Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers

Four Common Mistakes by Caregivers of Loved Ones with Dementia and What Do Differently (video)

My Loved One with Dementia

How to read and apply the FAST Scale to stage any type of dementia. Dementia Staging Made Easy. (Video)

Understanding Dementia (Alzheimer’s & Vascular & Frontotemporal & Lewy Body Dementia) (Video)

How Do I Know Which Dementia I’m Looking At? (Video)

Dementia Training material (Free)

Promoting Meaningful Relationships with Dementia Patients through Validation Therapy

Unlocking the Power of Validation Therapy in Compassionate End-of-Life Care

Validation Therapy: A Valuable Tool for Families and Healthcare Teams

Best Practices for Approaching Combative Dementia Patients

Dementia Insights: The Validation Method for Dementia Care

The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer’s Disease and Other Dementias

How Do I Know You? Dementia at the End of Life

The Dementia Caregiver: A Guide to Caring for Someone with Alzheimer’s Disease and Other Neurocognitive Disorders (Guides to Caregiving)

Sundown Dementia, Vascular Dementia and Lewy Body Dementia Explained

The Caregiver’s Guide to Dementia: Practical Advice for Caring for Yourself and Your Loved One (Caregiver’s Guides)

Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers

The Dementia Caregiver’s Survival Guide: An 11-Step Plan to Understand the Disease and How To Cope with Financial Challenges, Patient Aggression, and Depression Without Guilt, Overwhelm, or Burnout

Dementia Care Companion: The Complete Handbook of Practical Care from Early to Late Stage

Death and Dying Resources

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death.”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

Gone from My Sight: The Dying Experience

The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

By Your Side, A Guide for Caring for the Dying at Home

End-of-Life Doula Resources

Bridges to Eternity: The Compassionate Death Doula Path book series:

Find an End-of-Life Doula

Compassion Crossing, LLC – operates on-site through Madison County, Kentucky and virtually if you cannot find one local to you.
The International Doula Life Movement (IDLM) – https://www.internationaldoulalifemovement.com/directory/
The National End-of-Life Doula Alliance (NEDA) – https://www.nedalliance.org/end-of-life_doulas_a_through_m.html and https://www.nedalliance.org/doula_directory_n_through_z.html
The International End-of-Life Doula Association (INDELA) – https://inelda.org/find-a-doula/
EveryLoved – https://everloved.com/death-doulas/
Death Doula Director – https://deathdoulas.com/deathdouladirectory/

Currently, there is no universal director of end-of-life doulas (EOLD). It’s essential to note that some EOLDs listed in directories may no longer be practicing. The author recommends starting with IDLM, as their training program is always current and thorough, followed by NEDA, which is the only independent organization not affiliated with any school.

End-of-Life-Doula Articles