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The Caregiver Experience2017-11-11T06:35:41+00:00
  • “Bedside Diplomacy”: This American Life Podcast

    This thought-provoking and often funny podcast takes listeners into the otherworldly atmosphere of long-term hospital stays. It focuses on interactions between patients and hospital staff–when communication works, when it doesn’t, and why sometimes humor is the best way to get things done.

  • “Let’s Talk About Death” Only Human Podast

    In this engaging podcast, a small-town pastor goes on a mission to get her mostly African-American congregation to talk to their families about end-of-life decisions.

  • AARP: Care Recipients: Go From Guilty to Grateful

    This article offers some practical advice for a keeping the caregiver / care receiver relationship mutually healthy.

  • AARP: Caregiver Guide & Resources

    AARP offers a comprehensive site for caregivers of all ages. Visitors can find planning and discussion aids, information about legal and financial issues, and tips for self-care, as well as stories, encouragement, and links to caregiving in the news.

  • AARP: The Funny Side of Caregiving

    This article offers some practical advice on how to keep caregiving a bit more lighthearted, so everyone involved can say, “I’m ok, you’re ok, we’re all in the soup together.”

  • Being Mortal: Medicine & What Matters in the End

    Compassionate and engaging, Being Mortal demonstrates that life matters–all the way to the end.

  • Can I see a sample document that outlines end of life planning?

    This is an example of the customizable 5 Wishes form. The actual form can be purchased at the home site: https://www.agingwithdignity.org/

  • Caring From a Distance

    This organization seeks to meet the needs of long-distance caregivers. The site includes information about planning, resources, and finances. It also includes a collection of stories about others’ experience with long-distance caregiving and a portal to log in and keep track of medical information.

  • COMFORT Care Curriculum

    This communication guide is meant to train medical care team, but it could be helpful immensely helpful for any caregiver who is juggling resources and hard conversations. COMFORT stands for: Communication, Orientation & Options, Mindful presence, Family caregiver, Openings, Relating, Team.

  • Coping with Behaviors – for Caregivers of Dementia Patients

    The single most important thing you can do is learn the triggers to frustration or anger. Often a well-meaning caregiver will ask for something their loved one has always been able to do (info for taxes or feed the dog)—and the person with dementia may get uncharacteristically angry. Embarrassment or shame or terror is often beneath the expressed anger. Learn more about these symptoms and things you can do to help and protect your loved one, to care for yourself, and to support your relationship with the patient.

  • Dementia and Caregiver Support

    Studies have shown that caregivers of dementia patients take fewer vacations, have fewer hobbies, report higher emotional and physical strain, and many times disrupt close relationships with other family, and even affect their career and job benefits. In this helpful video, we’ll review important steps that caregivers can take to mitigate these strains and to ensure the safety of themselves and their patients and loved ones.

  • Good Reads: A Collection of Palliative Care Literature, With Reviews

    GoodReads offers a list of books on the theme of palliative care, including fiction, philosophy / self-help, memoir, and collections of patient stories, as well as more technical topics. Readers leave thoughtful reviews on the site, and those with a free GoodReads membership can engage in book discussion forums.

  • How can I calculate how much long-term care will cost?

    This extremely useful list of resources includes free apps (pill identifier, Rx scheduler, etc), a Q & A tool, a Social Security Benefits Calculator, a guided tour of the Affordable Care Act, and more.

  • Improved Decision Making About Feeding Options in Dementia

    This video addresses both logistical and emotional considerations when loved ones are making a decision about feeding a patient with dementia. It includes a list of questions to ask doctors and a guide to next steps. This resource is also available via iTunes: https://itunes.apple.com/us/itunes-u/aging-disability-long-term/id431759148 and in PDF form: https://decisionaid.ohri.ca/docs/das/Feeding_Options.pdf

  • NHCPO Caring Info

    This easy to navigate resource site, available in English or Spanish, includes both logistical and emotional resources for the hospice and palliative care patient and caregiver.

  • Palliative Care & Hospice Care Glossary

    This alphabetical list of key hospice and palliative care definitions can help clear up confusion and keep patients, providers, and caregivers on the same page.

  • Palliative Care Video Resources for Caregivers

    These quick and engaging videos offer users several perspectives about the experience of caregivers to patients receiving palliative care. Featured are caregivers, patients, and members of the care team.

  • Palliative Care: Four Seasons- Definition of Palliative Care

    With a clear and concise explanation of what palliative care includes, plus a rich printable manual for the “Confident Caregiver,” this is a good place to start for families and patients learning about palliative care.

  • Palliative Care: What You Should Know

    This one-page Q & A will answer users’ basic questions about palliative care.

  • Palliative in Practice: A Blog Discussing Pertinent Issues Across the Full Spectrum of Palliative Care

    This frequently updated blog from the Center to Advance Palliative Care allows patients and families a look at the latest conversations in the news about palliative care. Users can subscribe to receive updates.

  • PalliativeDoctors: Patient Stories

    Vivid stories from all sides of the palliative care experience. Informative, uplifting, and a good reminder that no one is doing it alone.

  • PalliativeDoctors: Talking to Children

    Practical tips for talking to children about illness, death, and dying. Includes links to other resources on the same topic.

  • PalliativeDoctors: What is Palliative Care?

    A simple, thoroughly-linked, and research based definition of palliative care.

  • PalliativeDoctors.org

    This is the patient site for the American Academy of Hospice and Palliative Care Medicine. It is rich with plain-language resources for families, caregivers, and patients, addressing topics such as definitions of palliative and hospice care, questions to ask the medical team, legal documents, and stories from patients.

  • Prepare for Your Care

    This easy to navigate site helps users make printable plans for various stages of end-of-life planning using step-by-step questions. Available in English and Spanish.

  • Quiz: Is Palliative Care Right for You?

    This 5-question quiz will help users decide if palliative care is the best choice for them. The quiz is part of the “Get Palliative Care” website, which includes many resources, a provider directory, videos, podcasts, and live chats.

  • TED Talk: Rethinking the Bucket List

    This 10-minute talk by a long-time mental health counselor is a funny, frank, inspiring, and engaging look at what we can learn from those in their last days of life.

  • The Conversation Project

    This site offers step by step resources for beginning and continuing conversations about end of life decisions with your loved ones. Free “Conversation Starter Kits” and “Talk to Your Doctor Guides” are available for download in several languages. The site also features a collection of personal stories about how conversations can shape life—in all its stages.

  • The Well Spouse Association

    With the motto, “When One is Sick, Two Need Help,” this site includes a wealth of resources for people caring for their sick spouses. There are links to helpful organizations, articles, stories, and other support groups–even a humor section. For a small fee, users can join the organization and participate in forums, newsletters, events in their area, and a mentorship program.

  • Where can I find an easy-to-use document for end of life planning?

    5 Wishes is an easy to use document that allows patients to have a voice in end of life decisions. 5 Wishes is written in everyday language and meets the legal requirements for advance directive in 42 states. This website offers 5 Wishes in online and paper form, in 28 languages, as well as specific information about how the form is used in your state.

  • Where can I find legal advance directive forms for my state?

    This site provides easy access to legal advance directive forms for every state.