Hospice Resources
Caring for a relative or loved one with a serious illness is often very emotional. Family issues, spiritual concerns, worry about pain and confusion over medical procedures can make a difficult job more difficult. Below are some resources to help you and your family navigate through this turbulent chapter of your lives. If you have caregiving concerns, please contact us at 469-630-2538.
Caregiving Tips and Tools
Online Support Groups
Pain Management
Specific Diseases
Understanding your loved one’s wishes
Benefits Checkup
This website sponsored by the National Council on Aging is set up to help you find what state, federal and local government health and financial programs are available in your area.
Healthy Aging
Sponsored by the American Geriatrics Society Foundation for Health in Aging, you will find nearly 30 articles excerpted from their book “Eldercare At Home”. These articles cover many common issues including physical problems, mental/social problems and caregiving techniques and strategies. Each one is organized so that it explains the problem, describes what you can do to at home, and highlights when you need to seek professional help.
Caregiver Action Network
Education, peer support and resources for family care givers.
Eldercare Locator
Sponsored by the Administration on Aging, this website is very helpful for caregivers who live in a different community from the person they care for. It connects older Americans and their caregivers with local sources of information on senior services.
Dying Well
Programs to support and sustain those caring for loved ones with chronic, disabling health conditions. Site has several caregiver tip sheets.
National Hospice and Palliative Care Organization
Provides information about hospice care providers as well as support for terminally ill individuals and their families.
National Association for Home Care and Hospice
Provides the latest industry news and information for hospice families, caregivers, and professionals.
Hospice Foundation of America
Provides hospice information and support. Also provides a message board for various hospice-related topics.
Caregiving Tips and Tools
Here you can find interactive tools and insightful websites to help you in your caregiving journey.
Nursing Home Compare
This website is sponsored by Medicare and allows you to view the performance record of all Medicare/Medicaid certified nursing facilities. It also offers guidelines for choosing a nursing home, and a nursing home checklist to help you in your decision-making.
Prepare
Website to help you make medical decisions for yourself and others.
MyMedSchedule.com
Use this password-protected, online form to make a medication chart that you can print out in full-size, or in the wallet-size version. Includes pictures of common medications to assist in recognizing which pills are for which condition. This “smart” web application can send medication reminders by email or text messaging. It can also send prescription refill reminders based on when medications should be getting low if they are being taken as directed. Another advantage of this online system is that you can refer to it anytime, from anywhere, simply by logging on. Helpful for traveling, or if you are helping a loved one who does not live with you. (In theory, you could even have your doctor or Emergency Department staff log on if medical help is needed but you don’t have the medication list with you.)
U.S. Department of Veterans Affairs
Describes services for veterans who are elderly or veterans of any age who need daily support and assistance.
Caring Connections
Provides Advance Directive forms as well as information and support to people who are planning ahead, caring for a loved one, living with an illness or grieving a loss.
Living With Loss
Living with loss and bereavement publications. Provides current resources, information and tools for coping with life’s losses.
National Association for Home Care and Hospice
Provides the latest industry news and information for hospice families, caregivers, and professionals.
Hospice Foundation of America
Provides hospice information and support. Also provides a message board for various hospice-related topics.
Hospice Net
Information about hospice and palliative care, terminal illnesses, caregiving and end-of-life and bereavement issues.
Better Care Starts With You!
Support Groups
Online Support Groups
Many people say that they like online support groups because of the ability to access it at their convenience, 24 hours a day, 7 days a week. Some also note that the anonymity of an online group makes them feel more comfortable speaking candidly.
Bereavement Support Groups
GriefNet.org is a national website with nearly 50 facilitated e-mail support groups covering topics such as loss of a parent, loss of a spouse/partner, loss of sibling or friend, spiritual aspects of loss, etc. Each topic has subtopics, such as young widowed, widowed with children, grief moving on.
Caregiver Support Groups
Alzheimer’s Support groups
The online message boards and chats are but one of many resources offered to family caregivers as well as patients in the early stages of dementia. Condition does not have to be Alzheimer’s disease. Participants can be coping with cognitive impairments from stroke, Parkinson’s, etc. Click on the “message boards” link on the right hand side of the page.
Cancer Support Groups
The Association of Cancer Online Resources provides support, information, and community to patients, family caregivers and professional health providers. There are over 130 online lists to choose from, including groups on specific diagnoses, alternative therapies, depression, fatigue, financial concerns. Online support groups offer the flexibility of 24 hour, 7 day a week access. Some people report that the anonymity of an online community is actually helpful in sharing feelings and concerns.
Better Care Starts With You!
Pain Management
Specific Diseases
Learning as much as you can about the condition is the first step to becoming an active participant in the care team. You might also want to start at Medline Plus, the online medical encyclopedia of the U.S. National Library of Medicine. They have links to easy-to-read articles and resources for over 700 conditions, as well as information on drugs, herbs and over-the-counter medicines.
Below is a list of the most common conditions and the national organizations that offer supportive services and/or information:
Arthritis Foundation
Toll-free at 1-800-568-4045 (Georgia).
Learn about the various types of arthritis. Find out what you can do to reduce flare-ups with diet, exercise, medication, lifestyle tips and complimentary therapies. You can also find local programs and services (e.g., arthritis-friendly exercise classes) located near you.
National Institute of Arthritis and Musculoskeletal and Skin Condition
Toll-free, (877) 22-NIAMS (Maryland).
One of the National Institutes of Health, this organization is the federal government’s clearinghouse for information about arthritis and arthritis research
National Osteoporosis Foundation
(202) 223-2226 (Washington, D.C.).
This website offers educational articles about how to prevent or reduce the progress of osteoporosis. Includes information on how to minimize the risk of injury from a fall. Find a support group in your area or a physician that specializes in the treatment of osteoporosis.
American Cancer Society
Toll free at (800) ACS-2345 (800-227-2345).
Sponsored by the premier non-profit Cancer organization in the country, here you will find educational articles and information to help you locate clinical research trials, or events and resources in your area. There are interactive tools to help you make treatment decisions. There are also links to cancer survivor support groups and information. This site provides educational materials in Spanish and several Asian languages.
National Cancer Comprehensive Network
A consortium 20 of the world’s leading cancer treatment centers created this website for patients and providers. In particular, it includes patient-friendly versions of nationally and internationally recognized treatment guidelines to help families stay abreast of state-of-the-art treatment options.
Alzheimer’s Association
Toll-free at (800) 272-3900, open 24-hours a day.
The Alzheimer’s Association provides information for all forms of dementia (stroke, Parkinson’s, etc.), not just Alzheimer’s. In addition to educational articles about living with memory loss, on this website you can find local chapters that frequently offer support groups, education and referrals to community services. There are also online message boards for participating in Internet support groups with other people (patients and families) coping with dementia. In addition, you can register for the Safe Return program, which helps find individuals who have wandered away and returns them back home.
Alzheimer’s Disease Education and Referral Center
Toll-free at (800) 438-4380, Monday – Friday, 8:30 AM – 5:00 PM Eastern Time.
This site is sponsored by the National Institute on Aging and includes an extensive collection of articles and publications concerning on-going research. You can also locate clinical trials studying new medications designed to stop or curb Alzheimer’s disease, and request email alerts for future studies.
American Parkinson’s Disease Association
Toll-free at (888) 400-2732.
This organization focuses on education and support. You can download a booklet on Parkinson’s disease available in several languages. You can also find information and referral centers, as well as support groups and other services available at your local chapter.
American Stroke Association
Toll-free at (888) 4-STROKE (888-478-7653) (Texas).
Provides educational articles on strokes and the recovery process. Subscribe to their free bi-monthly magazine, “Stroke Connection.” You can also find local information, or resources and events in your area by entering your zip code.
National Parkinson Foundation
800-327-4545.
Find out about recent research results, participate in their online community, or locate a support group or Parkinson’s specialist in your area.
American Association of Diabetes Educators
Toll-free at (800) 338-3633 (Illinois).
Find out about the benefits of working with a diabetes educator and how to locate one in your community. Their Diabetes Education section also offers factsheets and position papers on current issues in diabetes self-management.
American Diabetes Association
Toll-free at (800) DIABETES (800-342-2383) (Virginia).
Provides educational articles on diabetes prevention and management, and practical tools such as calculators and recipes. Find a listing of events and activities in your area or participate in online message boards with others coping with diabetes.
American Heart Association
Toll free at (800) AHA-USA-1 (800-242-8721) (Texas).
Locate information on resources and events in your area by entering your zip code. Learn about a variety of heart conditions, including heart attacks, heart failure, high blood pressure and peripheral artery disease. You might also want to check out their information dedicated to family caregivers in the section on “Diseases and Conditions.” Some materials on this website are available in Spanish.
American Stroke Association
(888) 4-STROKE (888-478-7653) (Texas).
Provides educational articles on strokes and the recovery process. Subscribe to their free bi-monthly magazine, “Stroke Connection.” You can also find local information, or resources and events in your area by entering your zip code.
Living with Advanced Congestive Heart Failure: A Guide for Family Caregivers
Developed by the Center for Palliative Care Studies, this is a .pdf booklet full of practical tips for living well in the advanced stage of this difficult condition. Topics include disease management strategies, the role of the caregiver, and end of life issues.
American Lung Association
Toll-free at (800) LUNG-USA (New York).
Learn about respiratory conditions including asthma, allergies, lung cancer, COPD and emphysema. Find out about national programs and events and find your local chapter by entering your zip code. Use the site search feature to find interactive treatment decision tools are available for some conditions (e.g., asthma, cancer and chronic obstructive pulmonary disease). Some of the information on this website is available in Spanish.
Living with Advanced Lung Disease: A Guide for Family Caregivers
Developed by the Center for Palliative Care Studies, this is a .pdf booklet full of practical tips for living well in the advanced stage of this difficult condition. Topics include disease management strategies, the role of the caregiver, and end of life issues.
Better Care Starts With You!
Understanding your loved one’s wishes
Center for Practical Bioethics
This is a consumer education initiative that helps individuals and their families share meaningful conversation while making practical preparations for end of life decisions. The downloadable booklet was put together by the Center for Practical Bioethics and is available in both English and Spanish.
Consumer’s Tool Kit for Health Care Advance Planning
This is a very thorough, yet readable, set of articles developed by the American Bar Association to help consumers consider the issues when preparing an Advance Directive.
Tool 1: How to Select Your Health Care Agent or Proxy
Tool 2: Are Some Conditions Worse Than Death?
Tool 3: How Do You Weigh Odds of Survival?
Tool 4: Personal Priorities and Spiritual Values Important to Your Medical Decisions
Tool 5: After Death Decisions to Think About Now
Tool 6: Conversation Scripts: Getting Past the Resistance
Tool 7: “Proxy IQ Test” for Family and Physician
Tool 8: What to Do After Signing Your Health Care Advance Directive
Tool 9: Guide for Health Care Proxies
Tool 10: Resources for Advance Planning for Health Care