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Nearly 44 million unpaid caregivers form the backbone of the US chronic and long-term care system. These hard working family members provide care to injured veterans, aging adults, children with special needs, and individuals with chronic medical needs. Currently, 72% of caregivers take care of someone 50 or older. As the Baby Boomer generation ages, the number of people who need care will continue to swell. ~ National Alliance for Caregiving
A reader writes: Can you lend your expertise and provide some resources that will aid in delivering hospice and palliative care to individuals and families who suffer with and alongside serious illness?
My response: Along with the dozens of articles and sites you'll find on my Hospice and Caregiving Pinterest board, I've assembled here a list of websites and resources I hope you will find useful. As always, I invite our readers to add their own suggestions in the Comments section below:
Barbara Karnes, RN
In her insightful and informative blog, respected hospice nurse and author Barbara Karnes answers questions and shares the observations and ideas she has gathered from years of experience working with people in their final months of life. Her site contains valuable end of life education and materials for families and professionals alike.
The Artful Caregiver
"Caregiving wisdom, woes, triumphs, and tips from a spouse who cares."
CaringInfo
With resources in advance care planning, caregiving, hospice services, and grief/bereavement, this is an excellent starting point for families contemplating hospice/palliative care as well as those grappling with caregiving responsibilities. Offered by the National Hospice and Palliative Care Organization, all resources are provided free of charge.
Family Caregiver Alliance
Long recognized as a pioneer in health services, The Family Caregiver Alliance supports and sustains the important work of families nationwide who are caring for loved ones with chronic, disabling health conditions. Services, education programs and publications are developed with caregivers’ expressed needs in mind, to offer real support, essential information, and tools to manage the complex and demanding tasks of caregiving.
Dial 211 for Essential Community Services
Available 24 hours a day, seven days a week, 2-1-1 is a free and confidential service that helps people across the U.S. and in many parts of Canada find the local resources they need. Calls to 211 are routed by the local telephone company to a local or regional calling center. The 211 center’s referral specialists receive requests from callers, access databases of resources available from private and public health and human service agencies, match the callers’ needs to available resources, and link or refer them directly to an agency or organization that can help.
Available 24 hours a day, seven days a week, 2-1-1 is a free and confidential service that helps people across the U.S. and in many parts of Canada find the local resources they need. Calls to 211 are routed by the local telephone company to a local or regional calling center. The 211 center’s referral specialists receive requests from callers, access databases of resources available from private and public health and human service agencies, match the callers’ needs to available resources, and link or refer them directly to an agency or organization that can help.
National Alliance for Caregiving
Aimed at professionals as well as caregivers, the National Alliance for Caregiving offers a variety of materials to support family caregivers, ranging from booklets and tip sheets to webcasts and conference materials. Links to all of these can be found in the Resources section.
CaringToday.com
This is the online site of CaringToday magazine, a bi-monthly hard copy magazine. Magazine and website focus is on providing real, practical advice for the family caregiver. Features include recipes, strategies for long-distance caregiving, gear and gadget reviews and more.
CareGiving.com - "We're a community of supportive individuals caring for a family member or friend. We care for parents, spouses, siblings, grandparents and anyone we consider family. We care for you before, during and after caregiving. Create your free account to join our daily, weekly and monthly chats, to start your blog and to connect with others who understand . . ."
Caregiver Action Network
The Caregiver Action Network serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. Other CAN websites include
Today’s Caregiver
Caregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers. The caregiver.com website offers topic-specific newsletters, online discussion lists, back issue articles, chat rooms and an online store.
Caregiving Resource Center
Assembled by the AARP, this site offers caregivers a wide variety of tools and resources for planning and organizing.
CareLinx
CareLinx is a nationwide professional caregiver marketplace, empowering families to easily find, hire, manage and pay licensed caregivers online. Its platform has more than 100,000 caregivers across the country.
VA Caregiver Support
The Veterans Administration offers a number of services that can provide the support that's right for veterans and the families who care for them. "Whether you and the Veteran you care for could use some help at home or you just need someone to listen, we're here to support you . . . Get started by learning about the services and support available to you as the Family Caregiver of a Veteran."
Well Spouse Association
The Well Spouse Association is a national, not for profit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled. Its newsletter features articles written by well spouses for well spouses and is mailed quarterly to all members.
OncoLink
OncoLink was the first cancer information website on the Internet, started in 1994, and remains one of the largest. This award-winning site is maintained by a group of oncology healthcare professionals who understand the need of patients, caregivers and healthcare professionals. Its content is continually updated and ranges from treatment and disease information for a newly diagnosed patient, support through the side effects of treatment, and into survivorship. “Our primary goal is to support patients, caregivers and practitioners through education. This education can empower patients to make educated treatment decisions, be active participants in their care and be their own advocate. We provide up-to-date cancer information, free of charge. We hope our passion for this goal shows in the resources you find on OncoLink.”
SeniorGuidance.org
SeniorGuidance.org provides comprehensive resources on various senior living options, including: assisted living facilities, senior living communities, nursing homes, independent living communities, continuing care retirement communities (CCRC) and all other long term senior care options, including memory care such as Alzheimer's or Dementia.
Senior Care Resources
Family Assets Senior Care Resources offers information on all there is to know about long-term care in free, easy-to-read and thoroughly researched guides ~ including the different health conditions affecting seniors, resources for their care, how to select the right level of care, and a comprehensive list of the financial resources available to pay for long-term care.
Senior Living Near Me
This organization provides free assistance to families who are in need of senior living. "At Senior Living Near Me, we first determine the senior’s care needs. Then, we help the family locate the appropriate senior living facility in their area that meets all of their needs – whether it is an assisted living facility, a memory care home, a nursing home or any other form of senior housing."
The Caregiver's Handbook: An Online Resource for Caring for a Loved One
"Helping a loved one as their caregiver is a selfless responsibility that many people take on at some point during their lives. But with this compassion can come significant challenges. From financial hardships to lack of sleep and privacy to feelings of isolation and even burnout, caregiving takes its toll. To help caregivers understand and find solutions to these and other challenges, we created an online guidebook packed with actionable advice and tips for success."
Additional Articles and Resources:
Aimed at professionals as well as caregivers, the National Alliance for Caregiving offers a variety of materials to support family caregivers, ranging from booklets and tip sheets to webcasts and conference materials. Links to all of these can be found in the Resources section.
CaringToday.com
This is the online site of CaringToday magazine, a bi-monthly hard copy magazine. Magazine and website focus is on providing real, practical advice for the family caregiver. Features include recipes, strategies for long-distance caregiving, gear and gadget reviews and more.
CareGiving.com - "We're a community of supportive individuals caring for a family member or friend. We care for parents, spouses, siblings, grandparents and anyone we consider family. We care for you before, during and after caregiving. Create your free account to join our daily, weekly and monthly chats, to start your blog and to connect with others who understand . . ."
Caregiver Action Network
The Caregiver Action Network serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. Other CAN websites include
Today’s Caregiver
Caregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers. The caregiver.com website offers topic-specific newsletters, online discussion lists, back issue articles, chat rooms and an online store.
Caregiving Resource Center
Assembled by the AARP, this site offers caregivers a wide variety of tools and resources for planning and organizing.
CareLinx
CareLinx is a nationwide professional caregiver marketplace, empowering families to easily find, hire, manage and pay licensed caregivers online. Its platform has more than 100,000 caregivers across the country.
VA Caregiver Support
The Veterans Administration offers a number of services that can provide the support that's right for veterans and the families who care for them. "Whether you and the Veteran you care for could use some help at home or you just need someone to listen, we're here to support you . . . Get started by learning about the services and support available to you as the Family Caregiver of a Veteran."
Well Spouse Association
The Well Spouse Association is a national, not for profit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled. Its newsletter features articles written by well spouses for well spouses and is mailed quarterly to all members.
OncoLink
OncoLink was the first cancer information website on the Internet, started in 1994, and remains one of the largest. This award-winning site is maintained by a group of oncology healthcare professionals who understand the need of patients, caregivers and healthcare professionals. Its content is continually updated and ranges from treatment and disease information for a newly diagnosed patient, support through the side effects of treatment, and into survivorship. “Our primary goal is to support patients, caregivers and practitioners through education. This education can empower patients to make educated treatment decisions, be active participants in their care and be their own advocate. We provide up-to-date cancer information, free of charge. We hope our passion for this goal shows in the resources you find on OncoLink.”
SeniorGuidance.org
SeniorGuidance.org provides comprehensive resources on various senior living options, including: assisted living facilities, senior living communities, nursing homes, independent living communities, continuing care retirement communities (CCRC) and all other long term senior care options, including memory care such as Alzheimer's or Dementia.
Senior Care Resources
Family Assets Senior Care Resources offers information on all there is to know about long-term care in free, easy-to-read and thoroughly researched guides ~ including the different health conditions affecting seniors, resources for their care, how to select the right level of care, and a comprehensive list of the financial resources available to pay for long-term care.
Senior Living Near Me
This organization provides free assistance to families who are in need of senior living. "At Senior Living Near Me, we first determine the senior’s care needs. Then, we help the family locate the appropriate senior living facility in their area that meets all of their needs – whether it is an assisted living facility, a memory care home, a nursing home or any other form of senior housing."
The Caregiver's Handbook: An Online Resource for Caring for a Loved One
"Helping a loved one as their caregiver is a selfless responsibility that many people take on at some point during their lives. But with this compassion can come significant challenges. From financial hardships to lack of sleep and privacy to feelings of isolation and even burnout, caregiving takes its toll. To help caregivers understand and find solutions to these and other challenges, we created an online guidebook packed with actionable advice and tips for success."
Additional Articles and Resources:
- For Clinicians - Links
- For Caregivers - Links
- 3 Things You Can Do As Someone Is Dying
- 4 Losses We Mourn with Chronic Illness
- 4 Questions for End of Life Preparation
- 4 Tips for Caregivers of Someone with a Serious Illness
- 5 Ways for Caregivers to Build a Support System
- 5 Tips to Help with Long-Distance Caregiving
- 9 End of Life Documents Everyone Needs
- 10 Books on Caring for Elderly Parents
- 24 Best Books on Caregiving (to Read in 2020)
- A Caregiver Checklist: 5 Things to Prepare When Caring for a Loved One at Home
- A Caregiver's Guide: Finance Protection for Those with Alzheimer's
- Resources and Support for Older Adults Living Alone: A Comprehensive Guide (2023)
- Activities To Do With A Sick Loved One
- All In This Together: Coping with Advanced Illness and Dying As A Family
- An elephant in the room: Grief in young adults with cancer
- Anticipatory Grief and Mourning: Suggested Resources
- Anticipatory Grieving: Mourning The Living
- Ask BR: How Can I Mentally Prepare To Become My Wife’s Primary Caregiver After Her Neurodegenerative Disease Diagnosis?
- Asking Questions at the End of Life
- Available: Volunteers to Help You Find Help
- Be Prepared for Emergencies As Death Nears
- Call 211 for Essential Community Services: Caregiving
- Cancer Care
- Care for the Caregiver DVD Kit
- Care for the Caregivers in Your Life
- Caregiver Abuse: The Role of Personality and Illness
- Caregiver Action Network
- Caregiver Remorse: 3 Ways to Find Peace
- Caregivers Feeling Relief and Grief Simultaneously
- Caregiving After A Stroke: Suggested Resources
- Caregiving's Impact on Intimacy
- Caregiving with Your Siblings
- Caring Bridge: Creating A Network of Support Online
- Caring for a Loved One: The Letter Every Caregiver Should Write
- Caring for A Person with Dementia
- Chasing My Cure: A Doctor's Race to Turn Hope into Action
- Coach Broyles' Playbook for Alzheimer's Caregivers: A Practical Guide
- Compassion Fatigue In Caregiving Is Real
- Coping with A Cancer Diagnosis: Suggested Resources
- Coping with Guilt as A Caregiver
- Creating A Wheelchair-Friendly Home: A Complete Guide
- Cruising through Caregiving: Reducing the Stress of Caring for your Loved One
- Daughterhood: Managing Parents' Care
- Diagnosing Illness: Cancer Support Resources
- Do I Need a Patient Advocate?
- Does Morphine Make Death Come Sooner?
- End-of-Life Stages and Timeline: What to Expect
- Family Discord As Death Approaches
- Financial Planning for End-of-Life Care
- Finding Local Caregiving Resources Is Not Always Fun and Games
- For Loved Ones of Critically Ill, Hope Often Trumps Understanding of Prognosis
- Four Things You May Not Know About Palliative Care
- Give InKind
- GoFundMe: Four Tips for Effective Medical Crowdfunding
- Grieving The Loss of Health
- Help for Caregivers at the End of Their Rope
- Helping Children Cope with A Parent's Serious Illness: Resources
- Home Health Care: Pros and Cons Plus Other Options
- Home Remodeling and Modifications for People with Special Needs
- Honoring the Moral Concerns of Caregivers Afraid of Giving Morphine
- Hospice and Caregiving - Grief Healing Pinterest Board
- How Can A Care Manager Help You?
- How Can Caregivers Better Manage Sleep and Burnout?
- How to Be A Better Caregiver When A Loved One Gets Sick
- How to Be a Friend Until The End
- How to Cope with the Terminal Illness of a Loved One
- How to Create a Peaceful, At-Home Hospice for Your Loved One
- How to Find The Right Words for Someone in Hospice
- How to Give Advice and Offer Help to Family Caregivers
- How to Take Care of Yourself When Your Parent Is Dying
- I CAREGIVER: Keep The Mood Up
- I'm A Caregiver And I'm So Beat UP
- "I'm So Angry That He's Sick"
- In Grief: After Caregiving Ends, Who Am I?
- Inheritance and IRAs Guide
- Learning About 'Ambiguous Loss' Helps Some Caregivers Cope with Grief
- Legal Planning for Dementia and Alzheimer's Families: A Guide
- Life After the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers
- Living with Dying: A Complete Guide for Caregivers
- Long-Distance Caregiving: Twenty Questions and Answers
- Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief
- Loving Someone with A Life-Threatening or Terminal Illness
- Medicare Plans: Patient Resource Center
- Music and Memory
- My Dad's Death Was Nothing Like I Imagined
- 'My Mom's Death Would Be A Relief': The Complicated Emotions of Caregiving
- Myths About The Dying Process
- New Booklet - What Now? Questions to Ask After a Terminal Diagnosis
- Open Caregiving - Share your story with other caregivers
- Palliative Care Can Support You At Diagnosis
- Pain At The End of Life
- Parent Toolkit: Hoping for the Best, Preparing for the Worst
- Parkinson's Symptoms Respond Well to Mind-Body Methods and Integrative Medicine Tools
- Paying for Assisted Living: Financial Assistance for Senior Living
- Power of Attorney: The People's Guide
- Prescription Medication Disposal
- Reiki At The End of Life
- Saying Goodbye at The End of Life
- Saying Goodbye to Someone Who Died or Is Dying
- Spinning Out of Control: When a Family Member Is Terminally Ill
- The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss
- The Artful Caregiver
- The Caregiver's Survival Handbook: Caring for Your Aging Parents Without Losing Yourself
- The Emotional Cost of Caregiving
- The Emotions of The Dying
- The End of Life Stages Timeline: What to Expect
- The Sandwich Generation -- Stuck in the Middle
- The Ultimate Guide to Traveling with Chronic Pain
- The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver
- Three Magical Phrases to Comfort a Dying Person
- Tips for Talking with Someone Who Is Dying
- Tips from a Hospice Nurse: What to Say to A Dying Person
- Using Social Media to Share Updates on A Dying Relative
- Ultimate Guide to Home Remodeling for People with Disabilities
- Voices of Experience: Sacred Presence, Silent Compassion
- Vulnerability and Connection Help Us Heal
- What Are The Spiritual Needs At The End of Life?
- What It's Like to Learn You're Going to Die
- When A Loved One Is Terminally Ill
- When Living at Home Is No Longer Possible
- When Your Partner Is Dying, What Do You Say?
- Your Ultimate Guide on Digital Death (and How to Handle It)
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