Links for families

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Caring for a relative with a serious illness puts you right in the middle of the health care system at a time when you are very emotional. Family issues, spiritual concerns, worry about pain, and confusion over medical procedures can make a tough job tougher. Here 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 828-692-6178, or toll-free at 866-466-9734. You are not alone. We at Four Seasons are happy to assist you.

Caregiving Tips and Tools

Here you can find interactive tools and insightful websites to help you in your caregiving journey.

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.

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.

Family Caregiver Alliance

The Family Caregiver Alliance pioneered the use of the Internet for supporting families. With factsheets, handbooks and policy briefs, they offer a broad range of downloadable resources based on the latest research findings. Many of their publications are also available in languages other than English.

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.

Independent Living Assessment

Developed by Boston University and sponsored by Phillips (the makers of the Lifeline product), this free, online questionnaire is designed to help determine if it’s safe for an individual to continue living without formal assistance. Questions address issues pertaining to balance and falling, social/emotional isolation, the ability to take medications reliably, and the ability to eat, bathe and handle personal hygiene. People who take the survey receive a multi-page report with “risk scores” in these different areas and suggestions for things you might consider doing to reduce the risk.

Lotsa Helping Hands

This free online service helps you easily create a password-protected family blog to speed communication about a loved one’s condition, upload photos, etc. It also facilitates the coordination of people who have said they would like to help. One person, usually a family member, becomes the coordinator and enters the email address of everyone who has expressed an interest in assisting. As needed tasks are identified by the coordinator, email invitations are sent to the helpers, who can go to the calendar and respond. No matter your need (a meal brought to the house, transportation to an appointment, the lawn being mowed), Lotsa Helping Hands spares you phone tag and the difficulty of asking for help. It also makes it easy for those who have expressed a desire to pitch in. The website can send reminder emails and gives you summary statements of what has been covered and what remains unassigned. They also have features that allow you to meet with other family caregivers online to share concerns and offer each other tips and support.

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.)

National Long-Term Care Ombudsman Center

info@theconsumervoice.org

If you are caring for a loved one who lives in a nursing home, a board and care home, or an assisted living facility and you have concerns about their care, an Ombudsman can help you to advocate on their behalf. An Ombudsman can educate you about residents’ rights and can help to resolve conflicts. This program is run by the National Consumer Voice for Quality Long-Term Care.

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.

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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.

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.

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.

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.

Caregiver Support Groups

Teen Support Groups

Starlight Children’s Foundation supports seriousily ill children, teens and their families before, during and after medical treatment. They host many in-person activites, but also have a strong Internet presence, in particular, Starbright World, an online community chat room for seriously ill teens.

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Pain Management

In addition to our own article on managing pain, you may want to check out the following:

Pain Control: A Guide for People with Cancer and Their Families

Produced by the American Cancer Society, this extensive article is written so individuals have the information they need to work with their doctors to develop a plan for managing cancer pain.

Partners Against Pain

Sponsored by Purdue Pharma, this website includes a special Caregiver’s Corner with articles and tools for persons caring for a loved one in pain. The website also has a strong advocacy component for persons interested in changing the current medical approach to pain management.

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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:

Bone and Joint Conditions

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.

Cancer

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.

Dementia (Alzheimer’s, Stroke, Parkinson’s, etc.)

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.

Diabetes

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.

Eye & Ear Problems

American Macular Degeneration Foundation

(413) 268-7660 (Massachusetts).
Provides educational articles on macular degeneration and news on latest research. The section on Help and Advice includes articles on topics ranging from vision aids and nutrition, to medications, depression and legal advice. The website also includes a Care and Services Directory to help you find professional eye care specialists, reading services and state agencies that assist the visually impaired.

Glaucoma Research Foundation

Toll-free at (800) 826-6693 or (415) 986-3162 (California).
Learn more about living with this disease and current research on treatment and cures.

Hearing Loss Association of America

301-657-2248 Voice or TTY (Maryland).
This non-profit group of persons with hearing loss offers support articles and information on technology, telecommunication services, implants, etc.

National Institute on Deafness and Other Communication Disorders (NIDCD)

This federal agency provides free downloadable publications from their website.

Heart Disease

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

Lung Conditions

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.

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Understanding your loved one's wishes

We suggest that you read the Important Decisions section of our website. There you will find articles to help you define quality of life, plan for health care you would like, and start the conversation with your loved one. Below, you will find other resources to assist you through the process of advance care planning.

Caring Conversations

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

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Please Note: Four Seasons does not specifically endorse the activities of these organizations, but offers their information as a sample of the kinds of materials and services that are available.