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
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
Children’s Grief Resources
For Ages 4-6
- The Goodbye Book by Todd Parr – Perfect for very young children experiencing loss for the first time.
- The Dead Bird by Margaret Wise Brown – A simple story about finding and burying a bird.
- I Miss You: A First Look at Death by Pat Thomas – Helps younger children understand death and grief.
For Ages 6-8
- When Dinosaurs Die: A Guide to Understanding Death by Laurie Krasny Brown – Explains death concepts clearly for this age group.
- Badger’s Parting Gifts by Susan Varley – Shows how memories can comfort us after someone dies.
- Charlotte’s Web by E.B. White – A classic that explores friendship, death, and acceptance.
For Ages 8-10
- Bridge to Terabithia by Katherine Paterson – Deals with unexpected death and processing grief.
- Lifetimes: The Beautiful Way to Explain Death to Children by Bryan Mellonie – Explains the life cycle in nature and humans.
- A Taste of Blackberries by Doris Smith – About guilt and grief after a friend’s death.
For Ages 11-13
- All the Blues in the Sky by Renée Watson – About a 13-year-old whose best friend dies on her birthday, exploring grief through counseling group experiences.
- The Truth as Told by Mason Buttle by Leslie Connor – Chronicles a boy dealing with a friend’s death, learning disability, and community judgment.
- The Year of the Rat by Clare Furniss – A 15-year-old coping with her mother’s death during childbirth and caring for the baby sister.
- What On Earth Do You Do When Someone Dies? by Trevor Romain – Accessible for ages 8 to young teens, addressing common questions about death.
For Ages 13-18
- RIP Corey: My Friend Died and It Sucks! by Chris Buchanan – A graphic novel designed for teens of all reading abilities to process grief.
- The Astonishing Color of After – A Time Magazine selection exploring grief, family history, and healing through art.
- The Boy in the Black Suit by Jason Reynolds – A 17-year-old learning to cope with terrible news and finding support.
- Crying in H Mart: A Memoir by Michelle Zauner – A powerful memoir about losing her mother and Korean American identity.
Specialized Grief Resources
- Fire in My Heart, Ice in My Veins by Enid Samuel Traisman – An interactive journal for teens to work through the grieving process.
- Grief: Insights and Tips for Teenagers by Joe Jansen – Features words from other young adults who’ve experienced loss.
- Grief Recovery for Teens by Coral Popowitz – Body-based practices for managing grief’s physical effects.
Young Adult Literature Exploring Grief:
- Clap When You Land by Elizabeth Acevedo – Two sisters united by their father’s death and his double life.
- The Grief Keeper by Alexandra Villasante – Speculative fiction addressing grief, trauma, and immigration.
- Long Way Down by Jason Reynolds – A teen coping with his brother’s shooting death.
- King and the Dragonflies by Kacen Callender – National Book Award winner about family grief.
Helpful Online Resources
- The Dougy Center offers extensive free resources, including activity sheets, tip sheets, and guidance for children and families. They provide age-appropriate materials and have partnered with Sesame Street on grief resources.
- Winston’s Wish provides comprehensive bereavement support for children up to age 25, including online chat, phone support, and downloadable resources. It also offers specialized guidance for different types of loss.
- Sesame Street Communities: Helping Kids Grieve features interactive videos with Elmo and other characters, activities for expressing feelings, and guidance for families. All resources are free and available in multiple languages.
- National Alliance for Children’s Grief (NACG) provides educational toolkits, connects families to local support services, and offers professional development for those working with grieving children.
- GriefShare helps locate local grief support groups for families and provides daily email encouragement for those processing loss.
Enhanced Online Resources for Teens
Specialized Teen Platforms
- Talk Grief—Winston’s Wish operates this dedicated online space for teenagers and young adults aged 13-25. It features peer stories and professional support.
- Teenage Grief Sucks – A teen-run website opening conversations about grief where teens can read candid stories and share their own experiences.
- Actively Moving Forward – A national network specifically created for grieving young adults, addressing the unique challenges of this age group.
- The Dinner Party – Young adults in nearly 100 cities worldwide meet for dinner, creating community for emerging adults who’ve experienced loss.
Comprehensive Teen Support Centers
- The Dougy Center Teen Resources provide age-specific materials including tip sheets that acknowledge “grief usually does what it wants” and doesn’t follow rules or schedules. They emphasize that there’s no right or wrong way to grieve.
- Hospice of the Valley Teen Resources offers specialized materials addressing how teens grieve differently than adults, sudden versus expected death, and losing siblings or friends.
- Children’s Room Teen Program provides peer support groups and activities specifically for teens to connect around shared interests while processing grief.
Interactive Support Options
- Winston’s Wish offers immediate support through live chat, helpline, and text services – no waiting lists required. They also provide one-to-one sessions with bereavement specialists for teens 13 and older.
- HEART Play for Young Adults connects late high school and college-aged individuals, providing space to discuss challenges of graduation, leaving home after loss, and meeting new people.
Educational Resources for Teens and Families
- The JED Foundation provides mental health resources showing teens how they can support one another and overcome challenges during the transition to adulthood.
- Eluna Network offers grief resources organized by specific age ranges, including detailed developmental information and support strategies for both middle school and high school students.
- National Alliance for Children’s Grief provides educational toolkits and connects families to local services, with materials specifically designed for adolescent grief.
Children and Grief Resources
For Ages 4-6
- The Goodbye Book by Todd Parr – Perfect for very young children experiencing loss for the first time.
- The Dead Bird by Margaret Wise Brown – A simple story about finding and burying a bird.
- I Miss You: A First Look at Death by Pat Thomas – Helps younger children understand death and grief.
For Ages 6-8
- When Dinosaurs Die: A Guide to Understanding Death by Laurie Krasny Brown – Explains death concepts clearly for this age group.
- Badger’s Parting Gifts by Susan Varley – Shows how memories can comfort us after someone dies.
- Charlotte’s Web by E.B. White – A classic that explores friendship, death, and acceptance.
For Ages 8-10
- Bridge to Terabithia by Katherine Paterson – Deals with unexpected death and processing grief.
- Lifetimes: The Beautiful Way to Explain Death to Children by Bryan Mellonie – Explains the life cycle in nature and humans.
- A Taste of Blackberries by Doris Smith – About guilt and grief after a friend’s death.
For Ages 11-13
- All the Blues in the Sky by Renée Watson – About a 13-year-old whose best friend dies on her birthday, exploring grief through counseling group experiences.
- The Truth as Told by Mason Buttle by Leslie Connor – Chronicles a boy dealing with a friend’s death, learning disability, and community judgment.
- The Year of the Rat by Clare Furniss – A 15-year-old coping with her mother’s death during childbirth and caring for the baby sister.
- What On Earth Do You Do When Someone Dies? by Trevor Romain – Accessible for ages 8 to young teens, addressing common questions about death.
For Ages 13-18
- RIP Corey: My Friend Died and It Sucks! by Chris Buchanan – A graphic novel designed for teens of all reading abilities to process grief.
- The Astonishing Color of After – A Time Magazine selection exploring grief, family history, and healing through art.
- The Boy in the Black Suit by Jason Reynolds – A 17-year-old learning to cope with terrible news and finding support.
- Crying in H Mart: A Memoir by Michelle Zauner – A powerful memoir about losing her mother and Korean American identity.
Specialized Grief Resources
- Fire in My Heart, Ice in My Veins by Enid Samuel Traisman – An interactive journal for teens to work through the grieving process.
- Grief: Insights and Tips for Teenagers by Joe Jansen – Features words from other young adults who’ve experienced loss.
- Grief Recovery for Teens by Coral Popowitz – Body-based practices for managing grief’s physical effects.
Young Adult Literature Exploring Grief:
- Clap When You Land by Elizabeth Acevedo – Two sisters united by their father’s death and his double life.
- The Grief Keeper by Alexandra Villasante – Speculative fiction addressing grief, trauma, and immigration.
- Long Way Down by Jason Reynolds – A teen coping with his brother’s shooting death.
- King and the Dragonflies by Kacen Callender – National Book Award winner about family grief.
Helpful Online Resources
- The Dougy Center offers extensive free resources, including activity sheets, tip sheets, and guidance for children and families. They provide age-appropriate materials and have partnered with Sesame Street on grief resources.
- Winston’s Wish provides comprehensive bereavement support for children up to age 25, including online chat, phone support, and downloadable resources. It also offers specialized guidance for different types of loss.
- Sesame Street Communities: Helping Kids Grieve features interactive videos with Elmo and other characters, activities for expressing feelings, and guidance for families. All resources are free and available in multiple languages.
- National Alliance for Children’s Grief (NACG) provides educational toolkits, connects families to local support services, and offers professional development for those working with grieving children.
- GriefShare helps locate local grief support groups for families and provides daily email encouragement for those processing loss.
Enhanced Online Resources for Teens
Specialized Teen Platforms
- Talk Grief—Winston’s Wish operates this dedicated online space for teenagers and young adults aged 13-25. It features peer stories and professional support.
- Teenage Grief Sucks – A teen-run website opening conversations about grief where teens can read candid stories and share their own experiences.
- Actively Moving Forward – A national network specifically created for grieving young adults, addressing the unique challenges of this age group.
- The Dinner Party – Young adults in nearly 100 cities worldwide meet for dinner, creating community for emerging adults who’ve experienced loss.
Comprehensive Teen Support Centers
- The Dougy Center Teen Resources provide age-specific materials including tip sheets that acknowledge “grief usually does what it wants” and doesn’t follow rules or schedules. They emphasize that there’s no right or wrong way to grieve.
- Hospice of the Valley Teen Resources offers specialized materials addressing how teens grieve differently than adults, sudden versus expected death, and losing siblings or friends.
- Children’s Room Teen Program provides peer support groups and activities specifically for teens to connect around shared interests while processing grief.
Interactive Support Options
- Winston’s Wish offers immediate support through live chat, helpline, and text services – no waiting lists required. They also provide one-to-one sessions with bereavement specialists for teens 13 and older.
- HEART Play for Young Adults connects late high school and college-aged individuals, providing space to discuss challenges of graduation, leaving home after loss, and meeting new people.
Educational Resources for Teens and Families
- The JED Foundation provides mental health resources showing teens how they can support one another and overcome challenges during the transition to adulthood.
- Eluna Network offers grief resources organized by specific age ranges, including detailed developmental information and support strategies for both middle school and high school students.
- National Alliance for Children’s Grief provides educational toolkits and connects families to local services, with materials specifically designed for adolescent grief.
Caregiver Resources
CaringInfo – Caregiver support and much more!
Surviving Caregiving with Dignity, Love, and Kindness
Caregivers.com | Simplifying the Search for In-Home Care
📚 This site uses Amazon Associate links, which means I earn a small commission when you purchase books or products through these links—at no extra cost to you. These earnings help me keep this website running and free from advertisements, so I can continue providing helpful articles and resources at no charge.
💝 If you don’t see anything you need today but still want to support this work, you can buy me a cup of coffee or tea. Every bit of support helps me continue writing and sharing resources for families during difficult times. 💙
- Beyond the Living Will: Creating Effective Advance Directives
- Daily Hospice Care Planner: Organize, Communicate, and Provide Consistent Care
- Dignity in Dying: A Thoughtful Approach to Voluntary Stopping Eating and Drinking
- Hospice Medication Handbook: A Caregiver’s Guide to Comfort Medications
- Nourishing Hope: A Caregiver’s Guide to End-of-Life Nutrition
- Palliative Care vs Hospice Care: Making Informed Decisions
- Palliative Sedation: A Compassionate Approach
- The Caregiver’s Lifeline: Self-Care in End-of-Life Care
- Understanding Breathing at End-of-Life: A Family Guide to Comfort Care
- Understanding Your Rights in Hospice Care: A Guide for Patients and Families
- Validation and Compassion: A Guide to Connecting with Terminally Ill Loved Ones
- When is it Time for Hospice?: A Compassionate Guide for Families and Caregivers
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
Everything Happens for a Reason: And Other Lies I’ve Loved
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
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
📚 This site uses Amazon Associate links, which means I earn a small commission when you purchase books or products through these links—at no extra cost to you. These earnings help me keep this website running and free from advertisements, so I can continue providing helpful articles and resources at no charge.
💝 If you don’t see anything you need today but still want to support this work, you can buy me a cup of coffee or tea. Every bit of support helps me continue writing and sharing resources for families during difficult times. 💙
Cancer Caregiving A-to-Z: An At-Home Guide for Patients and Families
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.
📚 This site uses Amazon Associate links, which means I earn a small commission when you purchase books or products through these links—at no extra cost to you. These earnings help me keep this website running and free from advertisements, so I can continue providing helpful articles and resources at no charge.
💝 If you don’t see anything you need today but still want to support this work, you can buy me a cup of coffee or tea. Every bit of support helps me continue writing and sharing resources for families during difficult times. 💙
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)
- Anger Management in Dementia: A Dementia Care Essentials
- CPAP and Oxygen for Dementia: A Dementia Care Essentials Guide
- Diabetes Care for Dementia: A Dementia Care Essentials Guide
- Hallucination Management for Dementia: A Dementia Care Essentials Guide
- Infection Awareness in Dementia Care: A Dementia Care Essentials Guide
- Medication Compliance for Dementia: A Dementia Care Essentials Guide
- Music Therapy for Dementia: A Dementia Care Essentials Guide
- Nutrition for Dementia: A Dementia Care Essentials Guide
- Placement for Dementia: A Dementia Care Essentials Guide
- Sundowning Management for Dementia: A Dementia Care Essentials Guide
- Dementia Staging Mastery: A Nurse’s Guide to Dementia Assessment
Dementia Home Care: How to Prepare Before, During, and After
DEMENTIA DENIED: One Woman’s True Story of Surviving a Terminal Diagnosis & Reclaiming Her Life
Atypical Dementias: Understanding Mid-Life Language, Visual, Behavioral, and Cognitive Changes
Fading Reflection: Understanding the complexities of 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)
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
How Do I Know You? Dementia at the End of Life
Sundown Dementia, Vascular Dementia and Lewy Body Dementia Explained
Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers
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
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:
- Becoming a Death Doula: Foundations and Practice
- Becoming a Death Doula: Business Growth
- Becoming a Death Doula: A Complete Guide to Starting Your End-of-Life Doula Practice (Foundations and Practice and Business Growth combined)
- Crafting Meaningful Legacies: A Guide for End-of-Life Professionals
- Vigil Planning Guide: Creating Sacred Space in Life’s Final Chapter
- Crucial End-of-Life Conversations: A Compassionate Guide for End-of-Life Professionals
- End-of-Life Doula Care Planning: A Complete Guide to Compassionate Care
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/
Right now, there’s no governing body that oversees end-of-life doulas (EOLD). Keep in mind that some EOLDs listed in directories may no longer be practicing. The author suggests starting with The International Doula Life Movement (IDLM), known for its regularly updated and thorough training. From there, consider INELDA and NEDA.
Nutrition Resources
Understanding Changes in Diet Texture for the Terminally Ill
Managing Dysphagia for Comfort: A Guide for Families
Managing Aspiration Risks in Hospice Care: A Guide for Families
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
Pain Assessment in Advanced Dementia Scale (PAINAD) – MDCalc
Uncontrolled Pain and Risk for Depression and Behavioral Symptoms in Residents With Dementia
Pain Assessment and Pharmacologic Management
Adult Nonverbal Pain Scale (NVPS) Tool for pain assessment
Assessing pain in patients with cognitive impairment in acute care
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
Holistic Nurses
Holistic Nurse: Skills for Excellence book series
- Compassionate Care in Conflict: A Nurse’s Guide to Managing Combative Patients
- Dementia Staging Mastery: A Nurse’s Guide to Dementia Assessment
- The Nurse’s Guide to Motivational Interviewing: Empowering Patients to Make Lasting Health Changes
- Clinical CBT Applications: Essential Strategies for Modern Nursing Practice
Hospice Nurses
Empowering Excellence in Hospice: A Nurse’s Toolkit for Best Practices book series
- Art of Hospice Prognosis: Essential Skills for Clinical Assessment and Family Communication
- Beyond the Hospital: Navigating a Career in Hospice Nursing
- Breath of Life: Managing End-of-Life Respiratory Symptoms
- Care Plans for Hospice Patients: A Comprehensive Guide
- Clinical Pathophysiology: A Reference for Hospice and Palliative Nurses
- Compliance-based, Eligibility Driven Hospice Documentation: Tips for Hospice Nurses
- Conversations at the End: Guiding Families Through Final Days
- HOPE in Practice: Implementing Patient-Centered Outcomes in Hospice Care
- HOPE in Action: A Practical Guide to Hospice Assessments
- Hospice Clinical Pharmacology: Critical Thinking for Comfort-Centered Care
- Hospice Tools of the Trade: Essentials for Hospice Nurses
- Mastering Dementia Admissions: Essential Guidelines for Hospice Eligibility
- Mastering Hospice Eligibility: An Essential Guide for RNs and Clinical Managers
- Mastering Hospice Recertifications: A Comprehensive Guide for Nurses
- Mastering the Hospice Item Set: A Comprehensive Guide for Nurses and Managers
- Medication Reconciliation in Hospice Care: Maximizing Quality of Life
- The Art of Hospice Visit Planning: A Clinical Guide to Patient-Centered Care Frequency
- The Complete Hospice Visit: A Nurse’s Guide to Excellence
- The Hospice CoP Handbook: Meeting Federal Mandates from Admission to Audit
- Time Management for Hospice Nurses: Practical Strategies for Rural Practice
- Whispers of Time: Understanding the End-of-Life Timeline
Hospice Scales
Confusion Assessment Method (CAM)
Cumulative Illness Rating Scale (CIRS)
Edmonton Symptom Assessment Scale (ESAS) and ESAS Form (PDF)
How to read and apply the FAST Scale to stage any type of dementia. Dementia Staging Made Easy. (Video)
The Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp)
Hospitalization Risk Profile (HRP)