Monday, September 21, 2015

Caregiving in Serious Illness: Suggested Resources

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.

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.

Caregiver Resource Library
The CareGiver Partnership lists hundreds of the most useful caregiver resources in one convenient place. Resources include non-profits, government and health care organizations, home care services, helpful caregiving products, financial information important to caregivers and information on the legal aspects of caregiving. Here you’ll find local and national resources and many helpful videos.

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. Caregiving
Reminding us of the need to balance our own needs with those of the person we're caring for, this site connects caregivers to numerous resources and community services.

National Caregivers Library
Here you'll find one of the most extensive libraries for caregivers that exist today, with hundreds of articles, forms checklists and links to topic-specific external resources, organized into logical categories.

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.”

Remember-me is a website that enables those with a serious or terminal illness to create messages that can be sent to their loved ones after their own death. The service is secure, simple, easy to use and accessible to the widest of audiences. The three-step process includes writing a message, adding some content such as a video or a selection of pictures, assigning a contact and deciding the moment of delivery. "It can be a priceless tool for users suffering from dementia to be remembered the way we all deserve to be. For the users unable to do it alone, working together with a close friend or family member can be such a meaningful project. There are as many good reasons as there are individual cases and personal situations to use remember-me, each one with their own value. We purely created this service to give the chance to those who feel the need to say a proper goodbye; the words that really matter." 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.

Additional Articles and Resources:
Your feedback is welcome! Please feel free to leave a comment or a question, or share a tip, a related article or a resource of your own in the Comments section below.If you’d like Grief Healing Blog updates delivered right to your inbox, you’re cordially invited to subscribe to our weekly Grief Healing NewsletterSign up here.

© by Marty Tousley, RN, MS, FT, DCC  [Updated September 15, 2017]

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