Educating Yourself

It can be overwhelming to realize that your parent has a problem. Whether there has been a formal diagnosis or you have just started noticing the need for help, the best thing you can do is educate yourself. Talk with the doctor and ask for written materials. You can also get good information from the Internet. But you must be careful that you are reading from credible sources.

Below is a list of online resources that can serve as an initial launch point for learning more about your family member’s condition.

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 At Home
Sponsored by the American Geriatrics Society Foundation for Health in Aging, you will find nearly 30 articles excerpted from their book “Eldercare At Home”. Although not specific to end of life care, 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.

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.

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, bath 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.

Legal Guide for the Seriously Ill
This useful booklet published by the American Bar Association walks through 7 key legal issues:

  • How to pay for care
  • Making a plan for health care and personal decisions
  • Making a plan to manage money and assets
  • Planning for the care of dependents
  • Patient rights
  • Employee rights
  • Important legal documents

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

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Pain Management

There is little that makes us feel more powerless than witnessing a loved one in pain or distress. Pain is a sign that something is out of balance. Faster breathing, grimacing and irritable behavior are non-verbal signs of pain. Consult with your physician if you suspect the person you care for is in pain. (You may want to ask for a referral for a “palliative care consult.” Your primary care doctor will remain your physician. A consult is simply asking a specialist to review the case and make further recommendations. Palliative care physicians and nurse practitioners specialize in pain relief, including distress of a more emotional or spiritual nature.)

In addition to seeking medical care, these pain management resources may include helpful tips:

National Pain Foundation
Founded in 1998, this non-profit is dedicated to empowering patients by helping them become actively involved in the design of their treatment plan, exploring both traditional and complementary approaches to pain management. Their website offers interactive resources and a virtual community for patients and their family and friends.

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
Hosted by an alliance of patients, caregivers and medical professionals, this website includes articles on caring for someone in pain, as well as pain tests you can use, even with persons who have dementia. It 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
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
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
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
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
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
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
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
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
Find clinical research trials, go to their Discussion Corner for “Ask the Doctor” “Ask the Surgeon” “Ask the Dietician” features, or locate a support group or Parkinson’s specialist in your area.

Diabetes

American Association of Diabetes Educators
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
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
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
Learn more about living with this disease and current research on treatment and cures.

Hearing Loss Association of America
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 Stroke Association
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
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 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

There may come a time when the person you care for needs medical care for life support, but is unable to speak for him- or herself. These online resources can help you work together ahead of time to do some advance care planning, so you will have a better understanding of your loved one’s wishes on this very personal matter.

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 or 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: Senior Life Management 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.