Caregiving Tips and Tools
Check out our section on Medical Concerns and Emotional-Spiritual Issues. In addition, we have an article filled specifically with Caregiving Tips providing instruction on hands-on care for the seriously ill.
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. www.benefitscheckup.org.
CarePages. A free service that helps you easily create a family blog to facilitate communication about a loved one's condition, upload photos, etc. www.carepages.com.
Careguide@home. Assembled by a group of geriatric professionals, this website offers online information and support on basic caregiving. In particular, it hosts an assessment to help prioritize issues in the realms of medication management, home safety, mental health, finances, and the need for a new living arrangement. Geared more for those caring for an elder who is in relatively good health. www.careguideathome.com.
Caregiver Stress. Sponsored by "Home Instead," a national company offering in home professional caregiving services, this website was constructed under the advisement of national leaders in caregiver research and support. Of particular interest is their caregiver stress assessment, which includes 20 questions and then advice and links to resources pertinent to your individual situation. www.caregiverstress.com.
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. www.healthinaging.org.
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. www.eldercare.gov.
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. www.caregiver.org.
Lotsa Helping Hands. This free online service facilitates the coordination of people who 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 actually pitch in and give in a way that works for them. The website can send reminder emails and gives you summary statements of what has been covered and what remains unassigned. www.lotsahelpinghands.com.
National Citizen's Coalition for Nursing Home Reform. Founded in 1975, this advocacy group has fact sheets and an extensive consumer resource section with articles on choosing a nursing home, coordinating care, resolving problems, etc. In addition, it has advocacy toolkits and information regarding current issues in long term care. www.nccnhr.org.
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. www.medicare.gov/NHCompare/Home.asp. (Return to list)
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. www.alz.org.
Bereavement Support Groups. GriefNet.org is a national website with 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. www.griefnet.org.
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. http://listserv.acor.org.
Caregiver Support Groups. Whether you are a new caregiver, a veteran caregiver (been at it for several years), or a caregiver in transition (e.g., the person you care for is now in a nursing home), there is a support group here for you. Some are sponsored by non-profit organizations, some by for-profits. Some are list serves, some have chats, some have instant messaging. Each group develops its own "flavor" or "personality".
Caregiving.com: www.caregiving.com.
Elder Care Online: www.ec-online.net.
Family Caregiver Alliance: www.caregiver.org.
National Family Caregiver Alliance: www.nfcacares.org.
Well Spouse Foundation: www.wellspouse.org/forums.
Children's Support Groups. Stephen Spielberg and General Norman Schwarzkopf spearhead the Starbright Foundation dedicated to empowering children and teens as they cope with the emotional trials of both chronic and terminal illness. This website includes an online community specifically for kids and teens. www.starbright.org. (Return to list)
Pain Management
In addition to our own article on managing pain, you may want to check out the following:
Cancer pain treatment guidelines. The result of a partnership between the American Cancer Society and the National Comprehensive Cancer Network, this report (also downloadable as a PDF document) is written for patients to help them understand and work with their doctors concerning state of the art cancer pain management. www.nccn.org/patients/patient_gls/_english/_pain/
1_introduction.asp.
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. www.nationalpainfoundation.org.
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. www.partnersagainstpain.com. (Return to list)
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. http://medlineplus.gov.
Below is a list of the most common conditions and the national organizations that offer supportive services and/or information:
- Bone and Joint Conditions
- Cancer
- Dementia (Alzheimer's, Stroke, Parkinson's, etc.)
- Diabetes
- Eye & Ear Problems
- Heart Disease
- Lung Conditions
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. www.arthritis.org.
National Institute of Arthritis and Musculoskeletal and Skin Conditions. 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. www.niams.nih.gov.
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. www.nof.org.
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. www.cancer.org.
Cancer.com. Although this site is sponsored by a private company (Ortho Biotech), its content is based on recommendations from medical experts and cancer advocates. It provides links to professionally reviewed cancer websites that can be easily narrowed to the type of cancer in question. www.cancer.com.
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. www.nccn.org/patients.
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. www.alz.org.
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. www.alzheimers.org.
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. www.apdaparkinson.org.
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. You can also find local information, or resources and events in your area by entering your zip code. www.strokeassociation.org.
National Parkinson Foundation. 800-327-4545. Find clinical research trials, go to their Discussion Forums for "Ask the Doctor" “Ask the Surgeon” “Ask the Dietician” features, or locate a support group or Parkinson's specialist in your area. www.parkinson.org.
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. www.aadenet.org.
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. www.diabetes.org.
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. It 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. www.macular.org.
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. www.glaucoma.org.
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. www.hearingloss.org.
National Institute on Deafness and Other Communication Disorders (NIDCD). This federal agency provides free downloadable publications from their website. www.nidcd.nih.gov.
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. www.americanheart.org.
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. You can also find local information, or resources and events in your area by entering your zip code. www.strokeassociation.org.
Living with Advanced Congestive Heart Failure: A Guide for Family Caregivers. Developed by the Center to Improve Care of the Dying, this is a downloadable booklet full of practical tips for living well with this difficult condition. Topics include disease management strategies, the role of the caregiver, and end of life issues. www.medicaring.org/educate/navigate/chfcopd.html.
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). www.lungusa.org.
Living with Advanced Lung Disease: A Guide for Family Caregivers. Developed by the Center to Improve Care of the Dying, this is a downloadable booklet full of practical tips for living well with this difficult condition. Topics include disease management strategies, the role of the caregiver, and end of life issues. www.medicaring.org/educate/navigate/chfcopd.html.
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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. www.practicalbioethics.org
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
www.abanet.org/elderly/toolkit/home.html
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