Resources

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 of the links do lead to Amazon for book suggestions; you are under no obligation to purchase anything.

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Starting Hospice Services

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

Medicare — Find and compare hospice providers

Advocacy Resources

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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

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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

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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 who has 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 CPRPotential Complications of CPR – Understanding the RisksConsequences of Survival After Cardiac Arrest

Psychotherapeutic Considerations for Patients With Terminal Illnes (PDF)

CPR Survival RatesDevelopment and Validation of the Good Outcome Following Attempted Resuscitation (GO-FAR) Score to Predict Neurologically Intact Survival After In-Hospital Cardiopulmonary Resuscitation

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

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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

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

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

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 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

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

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

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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

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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

Nutrition Resources

Managing Dysphagia for Comfort: A Guide for Families

Understanding Changes in Diet Texture for the Terminally Ill

Understanding Nutrition Changes in Hospice: Nourishing Comfort and Peaceful End-of-Life Journey

Food and liquids during the dying process

Nourishing with Care: Feeding a Terminally Ill Loved One

Understanding Protein-Calorie Malnutrition: A Guide for Families

Is my loved one starving or being dehydrated to death?

Understanding the Role of IV Fluids at the End of Life

Tube Feeding on Hospice — Increased Risk of Your Loved One Suffering

Pain Assessment and Pain Related Articles

Pain Assessment in Hospitalized Older Adults With Dementia and Delirium

Pain Assessment in Dementia – International Association for the Study of Pain (IASP)

Pain Assessment in People with Dementia: AJN The American Journal of Nursing

PAINAD Scale Offers Alternative to Assessing Pain in the Dementia Patient – JEMS: EMS, Emergency Medical Services – Training, Paramedic, EMT News

Pain Assessment in Advanced Dementia Scale (PAINAD) – MDCalc

Uncontrolled Pain and Risk for Depression and Behavioral Symptoms in Residents With Dementia

Chronic Pain & Symptom Tracker: A 90-Day Guided Journal: Detailed Daily Pain Assessment Diary, Mood Tracker & Medication Log for Chronic Illness Management

Pain And Symptom Tracker: Daily Pain Tracking Journal Detailed Pain Assessment Diary, Medication, Supplements Food & Activities Log for Chronic Illness Management

Pain Assessment and Pharmacologic Management

Adult Nonverbal Pain Scale (NVPS) Tool for pain assessment

Assessing pain in patients with cognitive impairment in acute care

FLACC Pain Scale

Pain Assessment in Advanced Dementia Scale (PAINAD)

Pain Assessment in Non-Communicative Adult Palliative Care Patients

Pain Assessment in People with Dementia

Tools for Assessment of Pain in Nonverbal Older Adults with Dementia: A State-of-the-Science Review

Understanding the physiological effects of unrelieved pain

Untreated Pain, Narcotics Regulation, and Global Health Ideologies

Restlessness and Terminal Agitation

Managing Terminal Restlessness

Delirium vs Terminal Restlessness

Clues for terminal restlessness often missed for facility patients

Terminal Restlessness in the Completely Nonverbal Patient

Understanding Terminal Restlessness

Dementia Care for loved ones who are habitually restless

Understanding Serotonin Syndrome: A Comprehensive Guide

Shortness of Breath Management

Managing Shortness of Breath in Hospice Care: Non-Pharmacological Methods for Comfort

How to Use Pursed Lip Breathing to Manage Shortness of Breath

Hospice Scales

Confusion Assessment Method (CAM)

Cumulative Illness Rating Scale (CIRS)

Edmonton Symptom Assessment Scale (ESAS) and ESAS Form (PDF)

FAST Scale for Alzheimer’s

The Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp)

Hospitalization Risk Profile (HRP)

Karnofsky Performance Scale

Mini Mental State Examination (MMSE)

Palliative Performance Scale

Timed Up & Go (TUG) Assessment Test

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