This is a short list to help you get started on finding the information or inspiration that you may be looking for. If you cannot find what you need, please let me know if I can assist you with a more detailed search.
MY FAVORITE (GUIDE)BOOKS & WEBSITES ABOUT SERIOUS ILLNESS & END OF LIFE:
A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death (2019) by BJ Miller, MD and Shoshana Berger, New York, Simon & Shuster, NY. (The emphasis is on PRACTICAL, very helpful review about planning ahead, dealing with illness, death and dying and getting help along the way.)
Being Mortal: Illness, Medicine and What Matters in the End (2014) by Atul Gawande, MD, New York, Metropolitan Books Henry Holt and Company. (Discusses how we deal with death in society and especially within healthcare and the importance of all of us being able to talk about aging, illness and death in order to live better.)
The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life (2013) by Ira Byock, MD, New York, Penguin Group. (Through stories and his clinical insight, this book helps to describe palliative care and why we need to improve how we deliver end of life care.)
The Four Things That Matter Most: A Book About Living, 10th Anniversary Edition (2014) by Ira Byock MD, New York, Simon & Schuster. (Insights on how to leave less unsaid with those you love.)
The Center for Dying and Living was founded by BJ Miller, MD a palliative care physician and is an interactive website with online discussions and resources for serious illness, aging, disability and death.
CaringBridge.org is a free online journal for communicating and sharing health updates and coordinating care with friends and family.
CAREGIVING:
There is a more extensive list of resources for caregivers on the Family Caregiver Resources Page.
Books:
The Unexpected Journey of Caring - The Transformation from Loved One to Caregiver by Donna Thomson and Zachary White. Rowman & Littlefield, (2019).
I highly recommend this book! The authors truly understand the experience of becoming a caregiver. They discuss the emotional territory, the importance being an advocate, and the need for self-care. It is an authentic description of the challenges while also pointing out the opportunities for growth and connection.
Websites:
https://www.caregiving.org/resources/general-caregiving/ - Website for the National Alliance for Caregiving which has a resource link with a comprehensive list of potential resources, information and organizations for caregivers.
https://www.caring.com/caregivers/ - Website dedicated to resources, directories and support for caregivers. Has information on Medicare, long-term care insurance, assisted living and much more.
https://eldercare.acl.gov/Public/Index.aspx - the US Administration on Aging has community resources for older adults.
https://www.nhpco.org/patients-and-caregivers/ - The National Hospice and Palliative Care Organization’s website has a dedicated section for patients and caregivers on end of life, hospice and palliative care.
HOSPICE AND PALLIATIVE CARE:
The National Hospice and Palliative Care Organization is the best place to start. Here are some key links:
https://www.nhpco.org/hospice-care-overview/ - (scroll down) for the history of hospice, facts and figures and more.
https://www.nhpco.org/wp-content/uploads/2019/04/Choosing_Hospice.pdf - Guidance on choosing a hospice.
https://www.nhpco.org/wp-content/uploads/2019/04/PalliativeCare_VS_Hospice.pdf - Clear description of palliative care and hospice, what they offer and how to distinguish between the two.
How to Find and Compare Hospices Near You:
https://www.medicare.gov/care-compare/#search - Links you to the government site where you can put in your location and then compare information on area nursing homes, hospices, hospitals, providers and more from patient and family surveys and quality benchmarks. Scroll down to select the ones you are interested in and then compare them based on this national data set.
https://getpalliativecare.org/ - Best place to start to find out what it is, & where and how to find it. In particular, there is a section for caregivers. https://getpalliativecare.org/resources/caregiver-resources/
THE END OF LIFE DOULA:
https://www.nhpco.org/wp-content/uploads/2019/07/Doulas_NHPCO-info.pdf - What are End of Life Doulas? The National Hospice and Palliative Care Organization has added an End of Life Doula Advisory Council which helps to validate this relatively new role.
https://www.inelda.org/category/news-press/ The International End of Life Doula Association offers links to news articles on End of Life Doulas and end of life care.
https://www.aarp.org/caregiving/home-care/info-2018/end-of-life-doulas.html - Learning to Serve the Dying: End of Life Doulas Provide a New Type of Caregiving to Patients and Families.
https://www.usatoday.com/story/news/health/2019/12/03/death-doulas-what-they-do-and-why-people-get-them/2596285001/ - Death Doulas Provide Support, Comfort and a New Option for the Dying and Their Families
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10637134/ Experiences of engaging a death doula: qualitative interviews with bereaved family members. An Australian 2023 study revealed that family members’ experience with a death doula was overwhelmingly positive, empowering them practically and emotionally to deliver the best end-of-life care. Furthermore, the relationships formed between doulas and families have the potential for a lasting, resonant effect.
DEMENTIA-RELATED RESOURCES:
Websites:
https://medlineplus.gov/alzheimerscaregivers.html
Highly recommend this website from the National Library of Medicine, especially the Related Issues Section (scroll down). It has numerous documents with practical information for caregivers on behavior management, dealing with grief/loss, tips on going to the hospital and more.
Wealth of information on treatment options, support groups, personalized online reference tools, research initiatives and caregiver assistance.
https://www.alzheimers.gov/life-with-dementia/tips-caregivers
https://www.alzheimers.gov/life-with-dementia/resources-caregivers
Both of these links cover a wide variety of topics specific to those caring for someone with Alzheimer’s and related dementias.
Offers general information on dementia and dementia care. Based on their criteria (location, involvement of experts, facility features and reviews) they also compiled a national directory of memory care facilities.
Books:
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias, 7th Edition (2021) by Nancy Mace, MA and Peter Rabins, MD. John Hopkins University Press, Maryland. (Comprehensive review and information on daily care needs, related medical issues, symptoms, getting help and the impact on 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 (2023) by Janet Cruz, Unlimited Concepts, Florida. (This entire book is focused on the issues of the caregiver of individuals with dementia.)
LEGACY WORK:
Some of these offer free resources and others require purchasing, but they all have some creative ideas.
https://www.sevenponds.com/before-death/leaving-an-ethical-will-or-heart-will - Provides an overview on how to leave an ethical will (letters, video, recordings)
www.livingwisely.org - Software platform to help people share their stories, memories, wisdom for generations.
www.thelegacycenter.net - Offers legacy related services and products to preserve stories, values and meaning.
www.storycorps.org - Resource for archiving and sharing a story/interview.
www.mylastingletters.com - Assistance in writing and recording a legacy letter.
https://www.conversationwithclay.com Share a story about an emotion, a profound experience, a person, a memory and see it turned into a beautiful and unique piece of art using polymer clay and glass.
https://audiolegacy.org/ - This website offers the ability to share your life stories and wisdom over the phone which they record and return via email or USB. There are some free services and varying prices depending on preferences.
https://www.looseendsproject.org
The idea itself is creative. When a crafter dies mid-project or is no longer able to do handwork due to disability or illness, they will likely have unfinished items they were making for friends and family. This website matches an unfinished project with a volunteer crafter.
Peace of Mind Planner: Important Information About My Belongings, Business Affairs and Wishes (2015) by Peter Pauper Press Inc. (Book to help you document all the details about what loved ones need to know to handle your affairs and honor your wishes. Can be found on amazon.com)
KEEPING VIGIL:
https://www.abc.net.au/life/how-to-sit-with-someone-who-is-dying/9998006 - Simple and helpful overview of sitting vigil.
https://irispublishers.com/ijnc/pdf/IJNC.MS.ID.000529.pdf - Conquering the Challenges of Sitting Vigil – an article and overview by nurses, Lori Harvin and Terry Ward.
ADVANCE DIRECTIVES:
http://polst.org - Communicates the wishes of seriously ill individuals as a medical order that is recognized across healthcare settings and in the community.
https://health.ri.gov/lifestages/death/about/advancedirectives/ - Provides the documents recognized in Rhode Island.
https://www.mass.gov/info-details/massachusetts-legal-forms-for-subjects-e-h#health-care-proxy-/-living-will- Information specific for Massachusetts along with the documents.
www.prepareforyourcare.org - Helps you to think about your wishes for your healthcare and understand advance directives which can then be stored on their website.
www.fivewishes.org - Approach to discussing and documenting advance directives.
www.theconversationproject.org - Initiative with lots of tools to help start the conversation around and prompts thinking about advance directives and end of life care.
www.mylivingvoice.com – another forum to help guide someone through completing an advance directive
https://www.nhpco.org/advancedirective/ - Site where you can download advance directives for all 50 states.
END OF LIFE PLANNING:
Websites:
Caring for the Body:
https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/Care+of+the+Body+After+Death.aspx - A Canadian hospice outlines how to care for the body after death.
https://www.homefuneralalliance.org/
- Website to support care of our loved ones after death with detailed information for home funerals.
Natural Burials:
Helpful Q & A about natural or green burials. https://www.joincake.com/blog/natural-burial/
More information on green burials. https://www.joincake.com/blog/green-burial-options/
National organization providing advocacy, education & certification for green burial cemeteries. https://www.greenburialcouncil.org/
National sources to order a biodegradable burial shroud. https://www.greenburialproject.org/resources/find-burial-shrouds
National sources to order a biodegradable coffin across the U.S. https://www.greenburialproject.org/resources/find-coffins
Rhode Island Green Burial Sites (this list is not exhaustive)
Swan Point Cemetery – Providence, RI (certified by Green Burial Council)
http://swanpointcemetery.com/green-natural-burial/Prudence Memorial Park – Prudence Island, RI (certified by Green Burial Council) https://prudencememorialpark.com/cemetery-services
Arnold Mills Cemetery – Cumberland, RI https://www.arnoldmillscemetery.org/green-burials
Funeral and Memorial Service Resources:
How to plan a memorial service. https://www.joincake.com/blog/how-to-plan-a-memorial-service/
Readings, sample funeral ceremonies and creative ideas. https://theinspiredfuneral.com/
This website is selling items, but also has a lot of free resources and templates for memorial services, along with quotes, poems, prayers and readings. https://www.creative-funeral-ideas.com/
Summary of funeral laws in Rhode Island. https://www.nolo.com/legal-encyclopedia/rhode-island-home-funeral-laws.html
Summary of burial and cremation laws in Rhode Island. https://www.nolo.com/legal-encyclopedia/burial-cremation-laws-rhode-island.html#5
End of Life Planning – Getting Organized
https://lantern.co/ A one stop website for navigating your life before and after death with checklists, resources, ability to upload and save documents and track and save progress. It also has creative ideas for sympathy gifts as well.
End-of-Life Checklist (to make it easier for your family) - Organized 31 – another option for guidance through the process.
Books:
Get It Together – Organize Your Records So Your Family Won’t Have To 9th Ed. (2020) by Melanie Cullen with Shae Irving J.D. Nolo Publishing, Berkeley, Ca. A complete guide to personal planning.
Final Rights – Reclaiming the American Way of Death (2011) Joshua Slocum and Lisa Carlson. Upper Access Inc. Book Publishers, Hinesburg, Vt. (Discusses the care of bodies, the funeral business and traditions in the U.S. Includes a chapter on the funeral laws of all 50 states.)
The Green Burial Guidebook by Elizabeth Fournier (2018). New World Library, Novato, Ca. (Detailed information on planning an affordable and environmentally friendly burial.)
I’m Dead. Now What? Important Information About My Belongings, Business Affairs, and Wishes by Peter Pauper Press. (2015), White Plains, N.Y.
BEREAVEMENT SUPPORT - LOSS & GRIEF:
Books:
Conscious Grieving – A Transformative Approach to Healing from Loss by Claire Bidwell Smith (2024) Workman Publishing Company. “Healing means making our lives worth the pain we endure when we lose someone we love.”
Feel me Brave: A Chronicle of Illness, Loss, and Living Beyond (2014) by Jessica Horak Stout and Walter Stout. West Woodstock Press, Vermont. (Following the death of their young son/grandson, the authors fused their journaling, poetry, and art into an honest and inspirational book.)
Grief is a Journey: Finding Your Path Through Loss (2016) by Dr Kenneth J Doka, New York, Simon & Schuster.
How to Go On Living When Someone You Love Dies (1988) by Therese A Rando, Lexington, Ma, Lexington Books. (Sentinal book with an overview of grief written by one of the experts.)
Anxiety: The Missing Stage of Grief: A Revolutionary Approach to Understanding and Healing the Impact of Loss (2018) by Claire Bidwell Smith, New York, Hatchette Book Group. (In depth look at a common symptom experienced after the loss of a loved one.)
The AfterGrief: Finding Your Way Along the Long Arc of Loss (2020) by Hope Edelman, New York, Penguin Random House. (Examines the long-lasting effects of grief that can continue to ripple throughout one’s life.)
Passed and Present: Keeping Memories of Loved Ones Alive (2016) by Allison Gilbert, Berkeley California, Seal Press. (Inspiring and creative ways to create ongoing memories for survivors of loss.)
It’s OK That You’re Not OK (2017) by Megan Devine. Sounds True, Boulder, Co. (Outlines skills and suggestions for comfort and care after experiencing loss.)
Video:
Claire Bidwell Smith: How the healthcare system can make grief harder | End Well (youtube.com)
Grief is hard enough but when family and friends feel the healthcare system has let them down. Hear from grief therapist and grieving daughter, Claire Bidwell Smith, about how she thinks healthcare can do better when it comes to caring for the dying and those who love them.
Websites:
https://clairebidwellsmith.com/resources/ ~ This grief therapist and author has an extensive and detailed list of recommended resources on her website with links to books, online resources, podcasts and talks.
https://whatsyourgrief.com/ ~ General information about grief.
https://www.nhpco.org/patients-and-caregivers/grief-and-loss/ ~ Good overview with videos and resources for support.