CHF-COPD
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Voluntary organizations with information on heart and lung disease, end-of-life care, and family caregiving.
Aging with Dignity
Five Wishes® An advance care planning document that is legally valid in 35 states. You may order a copy for $5.00.
Five Wishes Video. This 25 minute video highlights the importance of advance care planning, gives instruction on completing Five Wishes, tells what to do after you complete Five Wishes so that your wishes are followed, and answers common questions.
Both resources can be ordered by calling 1-888-5-WISHES (594-7437).
http://www.agingwithdignity.org
American Association of Retired Persons
Information about long-term care financing, home care, and housing options. Look for the AARP Meeting Place, a support group for caregivers.
American Heart Association
Detailed information on congestive heart failure, including diagnosis and state-of-the-art treatments.
American Hospice Foundation
Grief at School, Grief at Work, The Power of Grief, Grief and Faith
http://www.americanhospice.org/index.htm
American Lung Association
The ALA is the oldest voluntary health organization in the country; it fights lung disease in all its forms, with special emphasis on asthma, tobacco control, and environmental health, and offers a wealth of information and resources.
www.lungusa.org
Americans for Better Care of the Dying
ABCD aims to improve end-of-life care for all people, regardless of diagnosis or prognosis. Download patient and family caregiver information from website.
Beliefnet
One of the most active web sites for discussion of end-of-life care, Beliefnet offers users a regularly updated assortment of articles, columns, and essays on end-of-life issues, plus message boards and a question and answer section.
Caregiver.com
Contains back issues of Today's Caregiver Magazine, information on "Sharing Wisdom Caregivers Conferences", and a discussion forum.
Caregiver Resource Directory
Offered by Beth Israel Medical Center, this practical guide is intended to help family caregivers feel less alone and overwhelmed. It offers resources, facts, and advice about caring for a loved one, as well as the caregiver. The Directory is designed as an interactive three-ring binder with pockets and ample writing spaced so that caregivers can organize all resource and medical information in one place. The Directory can be ordered online at:
http://stoppain.org/caregivers/resource_form.html
CareGuide
Resources for family caregivers. It includes everything they need to assess, plan, manage, and monitor the best care for their loved ones.
COPD-Support, Inc.
COPD-Support, Inc. is a non-profit corporation which provides means of communication in order to provide support, education, and sharing information and ideas for individuals who have Chronic Obstructive Pulmonary Disease (COPD), caregivers of individuals who have COPD, and others who have an interest in the affliction.
http://www.copd-support.com
Death and Dying
This site contains a wide variety of information about death and dying. The site has information about advance directives, caregiving, grieving, funerals, and hospice and hosts chats open to the public.
http://dying.about.com/health/dying
Emphysema Foundation for Our Right to Survive
Online information and resources and a listserv for support. Non-profit organization of patients and family caregivers.
Family Caregiver Alliance
More than 20 years of advocacy and support for family caregivers. Site features online support for family caregivers, as well as bilingual information for Spanish-speaking people.
Friends and Relatives of Institutionalized Aged (FRIA) (New York)
Comprehensive Care Planning, What Families Need to Know and Do: Nursing Home Placements when there are Culture and Language Concerns (also available in Spanish, Chinese, Russian, and Korean)
Nursing Home Residents' Bill of Rights (NY specific)
Problem Solving Techniques: Advocating for your Relative (also available in Spanish)
Friends' Health Connection
Links caregivers of people with disabilities and chronic illness. It also has links to caregiver support organizations.
Funeral Consumers Alliance (FCA)
Before I Go, You Should Know. An end-of-life planning kit containing state-specific living will and other advance directives, a place to record ones funeral and final preferences, plus a booklet that encourages family communication.
For Your Personal Information. A page offering a variety of information regarding affordable funerals and what people can do to plan them before dying.
http://www.funerals.org/bookstore/index.htm
Heart Failure Online
Information and online support groups.
Heart Failure Society of America
Organized by cardiology experts, site includes information for clinicians and patients.
Hospice Foundation of America (HFA)
Living with Grief: At Work, Living with Grief: At School, Living with Grief: At Worship
In conjunction with the annual Living with Grief teleconference, HFA publishes the Living with Grief book series. Experts in grief and loss, educators, caregivers and clergy contribute chapters each year.
Choosing Hospice. This brochure details the basics of hospice, including services and payment.
Hospice Volunteers. This brochure discusses hospice volunteers, what they do and how people can become involved.
Hospice Care & the Military Family. This brochure provides an overview of the TGRICARE hospice benefit.
A Guide to Recalling and Telling Your Life Story. A complete workbook designed to prepare and stimulate you to recall and tell your life story by suggesting topics and questions for you to consider.
http://www.hospicefoundation.org
Hospice Net
Helping Yourself Live When you Are Dying, A Dying Person's Guide to Dying
Pain Control: Dispelling the Myths, How To Relieve Pain Without Medication
Last Acts
Loss and Grieving Series (Family Committee). A series of five brochures designed to provide helpful tips to specific audiences dealing with the grief process. The audiences addressed are children, friends, caregivers, healthcare providers, and the elderly.
Vision for Better Care art the End-of-Life (Palliative Care and Family Committees). This is a one-page flyer that describes the five principles upon which palliative care is based.
http://www.lastacts.org/section/resources
MetLife
Offers children of aging parents a list of helpful books and in-depth information on several caregiving issues. Services require registration and verification of address.
http://www.metlife.com/lifeadvice/
Michigan State University
Easing Cancer Pain: a Fireside Retreat empowers people with cancer who suffer from pain by providing them with a variety of resources to help them understand their pain and seek effective treatment. The software highlights the personal stories of people who are being treated for cancer pain, barriers to pain treatment, and various causes of cancer pain, as well as providing detailed information on approaches to pain relief. For details on obtaining single copies of the CD-ROM, contact The American Cancer Society Michigan Division at 1.800.723.0360
http://commtechlab.msu.edu/sites/cancerpain/index.html
Midwest Bioethics Center
Caring Conversations. Downloadable from their web site and also available in hard copy, this workbook includes a process to help facilitate conversations about advance care planning, and advance directives.
http://www.midbio.org/mbc-ccorder.htm
National Alliance for Caregiving
Support for family caregivers and the professionals who help them.
National Emphysema Foundation
Works to improve the quality of life of those who have emphysema, asthma, and related diseases through education, research, and direct patient care.
http://emphysemafoundation.org/
National Family Caregiver Alliance
Family Caregiver Alliance is a support organization for caregivers. You will find specialized information on Alzheimer's disease, stroke, traumatic brain injury, Parkinson's disease, ALS and other disorders and long-term care concerns.
National Family Caregivers Association
NFCA is a grass roots organization created to educate, support empower and speak up for the millions of Americans who care for the chronically ill, aged or disabled loved ones. Some of their publications are: Ten Tips for Family Caregivers, Caregiver Self-Advocacy Four Messages to Live By, A guide to Improving Doctor/Caregiver Communication.
National Heart, Lung, and Blood Institute
Part of the U.S. National Institutes of Health, premiere research organization.
National Hospice Foundation
Hospice Care. A consumer's Guide to Selecting a Hospice Program. This brochure contains information on what hospice care is, what services are provided, and what key questions to ask when selecting a hospice program.
Hospice Care and the Medicare Hospice Benefit. This brochure helps patients and family members understand more about hospice care, as well as to learn what are the eligibility requirements for and what services are provided under the Medicare Hospice Benefit.
National Hospice & Palliative Care Organization
About DNR Orders. This booklet introduces Do-Not-Resuscitate orders and cardiopulmonary resuscitation (CPR).
Advance Medical Directives. This booklet introduces advance directives and advanced care planning.
About Dying. This booklet discusses death and typical responses to a loved one's death.
Pain.com
The consumer section of this site contains extensive information regarding pain assessment and treatment. The site includes an "Ask the Doctor" section, online support groups, and a pain library.
http://www.partnershipforcaring.org
Advance Directives, Talking About Your Choices, Questions and Answers, Whose Death Is It Anyway? All are available on their web site.
Rosalynn Carter Institute for Human Development
Georgia Southwestern State University has now established the National Quality Caregiving Coalition with the goal of establishing periodic meetings of professional and family caregivers, bringing attention to caregiving, and providing information to caregivers.
Sacramento Healthcare Decisions
http://www.sachealthdecisions.org
Finding Your Way: A guide for End-of-Life Medical Decisions. This booklet guides individuals and their Families through many end-of-life medical decisions. Information on ordering this publication can be obtained by calling: 916-484-2485, or by email at shd@quicknet.com
University of New Mexico: Health Science Center Ethics Program
Values history. Available in hard copy and on the web, this packet offers the opportunity for you to discuss your values, wishes, and preferences in a number of different areas such as your personal relationships, your overall attitude toward life, and your thoughts about illness.
Well Spouse Foundation
Offers spousal caregivers support in the form of local groups or e-mail "round robins." The site also lists regional activities and publications for spousal caregivers.
Additional Links
Alzheimer's Disease Education and Referral Center http://www.alzheimers.org/
American Academy of Physical Medicine and Rehabilitation http://www.aapmr.org/
American Association of Homes and Services for the Aging http://www.aahsa.org/
American Health Care Association http://www.ahca.org/
Cancer Care http://www.cancercare.org/.
HomeCare On-Line http://www.nahc.org/
Health Insurance Information, Counseling and Assistance http://hiicap.state.ny.us/
Long Term Care Campaign http://www.caregivercredit.org/
National Institute on Community Based Long Term Care http://www.ncoa.org/niclc/niclc.htm
National Multiple Sclerosis Society http://www.nmss.org/
Visiting Nurse Associations of America http://www.vnaa.org/