Adaptive Equipment & Caregiving Corner
Their YouTube Channel have hundreds of short videos to help caregivers manage care tasks. For instance, you can find videos on tips and equipment for the bathroom, kitchen, and bedroom. Learn how to use a slide sheet to move bedridden patients, how to move patients using transfer boards, how to install and use bed rails and more. You can search by topic or view their playlists.
AdvoConnection Directory
A professional advocate can help you navigate your medical journey. This website, run by the Alliance of Professional Health Advocates, helps you find a private, independent advocate in the US and Canada. The services these professionals provide include advocacy, navigation, case and care management, help with decision making, help with medical billing and insurance claims, pain management and palliative care consulting, and mental health advocacy. Note there is no fee for using this website, but the advocates charge fees, which can be expensive.
All Home Care Matters
All Home Care Matters hosts a podcast and YouTube show devoted to discussing all things home care, with featured guests, resources, tips, and discussions on topics to help families as they navigate long-term care and caregiving matters.
American Association of Retired People
This nonprofit organization is geared towards people 50 and older, but there is plenty of useful information for patients and caregivers of all ages. The health information provided includes information on conditions and treatments, caregiving tips, health care reform, alternative medicines, drug and supplements and more. Information is available on-line in Spanish.
Betsy Lehman Center: Patient and Family Peer Support Network
https://betsylehmancenterma.gov/patient-safety-tips/patient-support
For Massachusetts residents, the Betsy Lehman Center’s Patient and Family Peer Support Network helps people cope with difficult feelings experienced after they have been injured during a medical procedure or treatment. The network connects patients or their loved ones with others who have had a similar experience.
Caregather.com
Caregather is a free website to coordinate support and generosity from a friend and family during a difficult medical situation. With your free Caregather, you can keep your closet care circle connected and broader network updated, post the ways to lend a hand, and indicate the gifts and support that will be most meaningful (like a gift registry for medical moments). By making it easier for a community to understand the best ways to support a patient and their caregivers, they can quickly take action to uplift them and keep life moving.
Caregiver.com
800-829-2734
This for-profit company publishes Today’s Caregiver Magazine, which can either be ordered and sent to you home or received on-line for no charge. The website offers resources for caregivers including a free newsletter, on-line discussion lists, and chat rooms. They hold “Fearless Caregiver” conferences.
Caregiver Action Network
301-942-6430
This nonprofit educates, supports, empowers and speaks up for caregivers. The website includes a resource guide, on-line forums for advice, peer support and advocacy.
Caregiving.com
This website shares insights, information and inspirations. This for-profit site offers many support tools at no charge, including monthly webinars, podcasts, live discussion groups, on-line support groups and blogs. Coaching services are available for a fee.
Caring Bridge
This free website service, operated by a nonprofit organization, allows patients and families to set up protected, private webpages to post health updates for keeping friends and family notified. Visitors can leaves supportive messages. Their SupportPlanner calendar allows you to coordinate friends and family members to help you with tasks such as meals and rides. Multiple privacy settings allow you to determine level of access. Site features available in Spanish as well.
Cleaning for a Reason
This nonprofit provides free professional housecleaning and maid services to improve the lives of women undergoing cancer treatment (note: this is for cancer patients only). This service is available throughout the U.S. and Canada, but not all geographical regions have participating providers. However, the coverage area is expanding as they regularly add new providers to their network.
Courageous Parents Network
www.CourageousParentsNetwork.org
This nonprofit empowers and supports parents caring for children with life-threatening illnesses by providing coping tools and resources that promote family resiliency. The organization provides expert guidance, a 24/7 community to offer validation and to lessen isolation, promotes palliative care, and works with medical providers to educate them on the specific needs of families with very ill children.
Facebook Caregiver Support Group
This Facebook group connects you to other caregivers who can offer support and practical advice on a wide range of caregiving topics. You must ask the group administrator to join this group.
Family Caregiver Alliance
800-445-8106
This nonprofit is an information clearinghouse for caregiver resources, respite care and professional referrals. They publish educational materials and medical updates on specific illnesses, legal issues, caregiving strategies and more. Members connect through teleconferences, workshops, seminars and retreats for dementia patients in California.
HealthCare.gov
This site is managed by the U.S. Department of Health and Human Services. Find health insurance information and options, learn about prevention, and find links to sites to compare hospitals, nursing homes and dialysis facilities. Information is available on-line in Spanish.
Inspire
Share and learn from other patients and family caregivers on this free site.
Lotsa Helping Hands
This free on-line service, as well as their free app, allows patients and families to connect with their friends, families and others who want to provide help. Use their on-line calendar to organize your support network to provide help such as meals and rides. You can manage your calendar yourself, or designate a coordinator. Regular reminders are sent to volunteers. Patients and families can post photos and messages that their network can view and comment on. Other website features include an ability for members to communicate with other members. Privacy settings allow you to control level of access.
My PowerPak
This community-based digital platform (app) empowers patients and families to connect with their community and to receive support. Features include a journal for sharing updates, a calendar for organizing help, a messaging system to connect with your community, a wish list for items needed and/or wanted, and more.
National Alliance for Caregiving
This nonprofit coalition of national organizations focuses on the issues of family caregiving. The website provides helpful publications, tips for caregivers and links to other useful sites.
Neighbor Brigade
This nonprofit group organizes networks of support in local communities where neighbors are quickly mobilized to help other neighbors in time of crisis. Each chapter consists entirely of neighborhood volunteers who donate their time to provide help with tasks such as grocery shopping, meal delivery, car pooling, and light house and yard work. Chapters exist only in Massachusetts, Rhode Island, and New Jersey, but the organization is looking to expand into other states.
Next Step in Care
This site is a campaign of the United Hospital Fund, a nonprofit organization. The site provides guides for family caregivers and health care professionals. Although there is a focus on how to better manage and improve transitions in care (moving the patient from one location to another), many caregiving topics are covered, including ER visits, rehab, hospice and palliative care and home care. Information is available on the website in Spanish, Chinese and Russian.
Open Caregiving
Open Caregiving offers free technology-enabled products to help caregivers, empower them to advocate for care recipients, and improve their access to quality care. Their resources include caregiving stories, an extensive caregiver glossary, guides to end-of-life care, and a hospice search tool to help caregivers and patients find the right hospice provider. They are continuously expanding their tools and resources to meet the growing needs of caregivers across the country.
Patient Advocate Foundation
This nonprofit organization provides free case management services for U.S. patients dealing with a chronic, life-threatening or debilitating diagnosis. Help is provided on issues such as access to care, insurance, medical debt and job retention.
Patients Like Me
This is a free health information sharing website. Interact with patients and family caregivers dealing with similar conditions, symptoms and treatments. Additionally, the site collects information from users on side effects of medications and treatments which are then reviewed by a team that includes doctors. Look up information provided from over 350,000 members regarding side effects of treatments of more than 2,500 conditions.
Ronald McDonald House
Ronald McDonald houses provide housing and support to families when their children are in the hospital, for little or no cost. Families receive home cooked meals, stay in private bedrooms and have access to kids’ playrooms.
Smart Patients
This free online community offers information about treatments and clinical trials for over 75 conditions. You can also share your story and learn from others.
Society of Critical Care Medicine
This nonprofit organization’s site provides information on ICUs (Intensive Care Units) for caregivers of critically ill or injured patients. Find information and resources designed to help you understand the ICU environment. The site includes a glossary of terms and information on: common ICU problems, sepsis (body’s response to infection), decision making, palliative care, evaluating ICUs, safety tips, and other ICU related topics.
Therapy Dogs International
This volunteer organization is dedicated to bringing dogs to nursing homes, hospitals, hospices and private homes for therapeutic visits. The organization regulates, tests and registers therapeutic dogs and their volunteer handlers in all 50 US states and Canada. A great way to brighten up the day of a patient.
Wellspouse Association
800-838-0879
This nonprofit serves the “well spouse” of the chronically ill. Members connect through on-line chat, letters, telephone networks, and a national network of support groups. They host regional respite weekends for caregivers and a national conference. Educational materials are available through their website.
