Monday, September 21, 2015

Caregiving in Serious Illness: Suggested Resources

[Reviewed and updated December 15, 2023]

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."

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.

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.
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. - "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 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 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 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.” 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:
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