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.
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.
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.
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.
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.
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:
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.
The American Chronic Pain Association offers a consumer-oriented website providing information, education, peer support and resources. As with most pain organizations, they receive their funding from pharmaceutical companies. They do appear to address pharmacologic and non-pharmacologic approaches to pain management with an emphasis on quality of life.
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:
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.
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.
(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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
(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.
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.
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 “Health Topics.” Some materials on this website are available in Spanish.
(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.
Developed by the American Heart Association, look here for “Tools and Resources” that include many downloadable handouts for working with doctors as well as addressing the challenges of daily life with heart failure.
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.
Developed by the American Lung Association, you can find resources here for managing the condition as well as online support groups for sharing tips and common experiences.
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.
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.
The National Hospice and Palliative Care Organization offers this webpage as a place to locate and download (no cost) the legally approved advance directive in all 50 states and the District of Columbia.
Please Note: LifeCare Solutions does not specifically endorse the activities of any organizations mentioned, but offers their information as a sample of the kinds of materials and services that are available.
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.
