Full Circle

It's a beautiful Sunday afternoon following several nights worth of extreme Arizona monsoon thunderstorms which expemplifies the tulmultous developments in my family's lifecycle since my last post. After nearly six years of being the sole caregiver to my parents I hit bottom, total burnout....complete emotional, spiritual and physical breakdown. I have been in a holistic recovery center (The Sundance Center) now for the past month.

Pop has suffered several small TIA's affecting his speech and mental clarity, spent several weeks in Del Webb Hospital's SAGE unit (Support Adaptation Growth Enrichment Program), been diagnosed as having early stages of dementia and is now living at The Freedom Inn in Sun City West in his own studio apartment but not adjusting well to the transition despite the high level of facilities and care he is receiving. Anyway you shape it up, it's still not home.

Mom is still at home with my sister Kathy caring for her following spinal fusion surgery in March and knee replacement surgery last week.

Wellshpere Network Addition!

I'm very pleased to announce that "A Caregiver's Silence" has been noticed and I was contacted by Geoffrey W. Rutledge MD, PhD and asked to add "ACGS" to the Wellsphere Network's family of health related blogs! Wellsphere builds online healthy living communities that help people ‘Get active, Eat better and Unwind’. Wellsphere’s groundbreaking platform works by connecting each member with local health and wellness resources, classes and activities that match their unique interests and goals, and with the personalized advice and social support they need to sustain healthy habits. The company hosts a public website for consumers at http://www.wellsphere.com and creates proprietary communities (such as BeWell@Stanford) for large organizations seeking to improve the health and well being of their members and reduce their healthcare costs. Wellsphere is headquartered in San Mateo, California.

I am very flattered and excited about this new collaboration and welcome new readers coming onboard through Wellsphere!

Important Web Links

I'll be sifting through these and checking them and adding one by one to the links section to the right but wanted to post these us now for those who may need them:

Aging

Ageworks - provides graduate and undergraduate education over the Internet, an informational website on aging and continuing educational modules for professionals working in long term care.

American Geriatrics Association - one of the largest professional organization of health care providers. Includes membership, educational and publication information.

American Society on Aging - Enhancing the skills and knowledge of those working with older adults and their families.

Families USA - a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health and long-term care for Americans. Good information on national healthcare policy.

Gerontological Society of America - multidisciplinary society for professionals in the field of aging. Focuses on promoting the scientific study of aging.

International Longevity Center - a non-profit, non-partisan reseach and education organization helping societies address longevity population aging in postitive productive ways.

Maturity Health Matters - an online newsletter about U.S. Food & Drug Administration (FDA) regulated products for older adults, their families and their caregivers.

National Citizens' Coalition for Nursing Home Reform - a national consumer advocacy group that educates consumers about how to get good care in nursing homes and advocates for policies that will improve conditions for nursing home residents.

National Council on the Aging - help older people remain healthy and independent, find jobs, increase access to benefits programs, and discover meaningful ways to continue contributing to society.

National Institute on Aging - research profiles, funding, health information and publications.



Caregiver Resources

Arch National Respite Network and Resource Center - supports service providers and families through training, technical assistance, evaluation, and research.

Caregiver.com - articles on caregiving, caregivers, and home care workers.

CARING TODAY - a magazine and website—provides useful advice and how-to articles on range of caregiving topics.

StrengthforCaring.com - a comprehensive online resource and community for family caregivers.

WellSpouse Foundation - national nonprofit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled.



Directories and Resource Locators

Benefits Checkup - helps thousands every day to find programs for people ages 55 and over that may pay for some of their costs of prescription drugs, health care, utilities, and other essential items or services.

Directory of Web and Gopher Sites on Aging - from the Administration on Aging's Department of Health and Human Services.

Eldercare Locator - a nationwide, directory assistance service designed to help older persons and caregivers locate local support resources for aging Americans to help them remain independent in their own homes.

GetPalliativeCare.org - a palliative care resource created for patients and families that also includes sections for medical practitioners and policymakers. The site is easy to navigate and provides clear, comprehensive palliative care information for people coping with serious, complex illness.

GeroInformatics Workgroup at the Wayne State University's Institute of Gerontology - resource for researchers, educators, practitioners, and others interested in aging and older individuals.

National Academy of Elder Law Attorneys - search for an elder law attorney near you.

National Association of Professional Geriatric Care Managers - a non-profit, professional organization of practitioners whose goal is the advancement of dignified care for the elderly and their families.

Senior Sites - source of non-profit housing and services for seniors.



Disease Specific Organizations


ALS

The ALS Association (National) - up-to-date information and education materials on ALS.

Alzheimer's Disease/Dementia

Alzheimer's Association - site with updated research information, chapters, caregiver information and public policy information.

Alzheimer's Disease Education and Referral Center - site with Alzheimer's information, research, and caregiving suggestions.

American Health Assistance Foundation - nonprofit charitable organization that has dedicated over 30 years to funding research on age-related and degenerative diseases, educating the public about these diseases, and providing emergency financial assistance to Alzheimer's disease patients and their caregivers.

Lewy Body Dementia Association - information for patients with Lewy Body Dementia and their caregivers.

Pick's Disease Support Group - articles, support groups, and resources for patients.

Ataxia

National Ataxia Foundation - information about and support for people with ataxia.

Brain Injury

Brain Injury Association of America - national program with a network of more than 40 chartered state affiliates, as well as hundreds of local chapters providing information, education and support to individuals, families and professionals affected by brain injury.

Brain Injury Resource Center - information, skill-building and discussion groups. Extensive links to resources, rehab, and research sites, as well as lay and professional journals.

Defense & Veterans Brain Injury Center - Serves active duty military, their dependents and veterans with traumatic brain injury. Offers evaluation, treatment, follow-up care, educational materials and research.

Tamara Greenspan Head Injury Collection - Free resource library, with many good books on brain injury available through the interlibrary loan system.

The Traumatic Brain Injury Model Systems - created to demonstrate the benefits of a coordinated system of neurotrauma and rehabilitation care and conduct innovative research on all aspects of care for those who sustain traumatic brain injuries.

Brain Tumor/Cancer

American Brain Tumor Association - Provides information about brain tumors, treatment options, clinical trials, and living with a brain tumor.

American Cancer Society - dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering.

CancerCare - resources and information related to costs for caring for those with cancer.

Cancer.com - a web resource for people touched by cancer including patients and their families, caregivers and health providers. The site was developed as part of Ortho Biotech's dedication to cancer research and education. Cancer.com was created to facilitate quick and easy searches for cancer information and includes a comprehensive listing of credible cancer web sites. The site content is reviewed and approved by an advisory board of cancer advocates and medical experts.

National Brain Tumor Foundation - non-profit organization serving people whose lives are affected by brain tumors.

National Cancer Institute - official site for the National Institute of Health's principal agency for cancer research.

StrengthforCaring.com - online resource and community for family caregivers.

Cerebral Palsy

United Cerebral Palsy Association - world's premier gateway to disability resources on the Internet and is a network for people with disabilities,

Creutzfeldt-Jacob Disease

Creutzfeldt-Jacob Disease Foundation - offers support, information and guidance to those dealing with the degenerative neurological disorder CJD.

Epilepsy

Epilepsy Foundation of America - serving people with epilepsy and their caregivers through services, information.

HIV/AIDS Dementia

National Prevention Information Network AIDS website -HIV InSite - university-based, global Internet resource on HIV/AIDS that incorporates comprehensive,multidisciplinary information on basic science, treatment, prevention, and policy, and is one of the world’s most visited

HIV/AIDS Web sites.

Huntington's Disease

Hereditary Disease Foundation
Huntington's Disease Society of America, Inc.

Hydrocephalus

Hydrocephalus Association

Multiple Sclerosis

National Multiple Sclerosis Association of America
National Multiple Sclerosis Society

Parkinson's Disease

American Parkinson Disease Association, Inc.
National Parkinson Foundation

Spinal Cord Injury

Christopher Reeves Paralysis Foundation
National Spinal Cord Injury Association

Stroke

American Heart AssociationNational CenterAmerican Stroke AssociationNational Stroke AssociationNational Institute of Neurological Disorders and Stroke
Tourette's SyndromeTourette's Syndrome Association, Inc.

Other Disease RelatedAlliance of Genetic Support GroupsAmerican Academy of NeurologyAmerican Chronic Pain AssociationHuman Genome Project InformationNational Institute on Deafness and Other Communication Disorders



Elder Abuse
MedlinePlus: Elder Abuse - trusted health information on elder abuse from the U.S. National Libarary of Medicine.National Association for the Prevention of Elder Abuse - information and publications on how to recognize and report elder abuse.National Center on Elder Abuse - offers fact sheets, news, publications, statistics and resources.
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Federal Government Agencies
Administration on Aging - aging news, aging pages, funding information, Older American Act programs, statistical information on older adults.Centers for Disease Control and Prevention's National Center for Health Statistics: Aging Activities - an agency of the United States Department of Health and Human Services.Centers for Medicare and Medicaid Services - the federal agency that administers the Medicare, Medicaid and Child Health Insurance Programs.Department of Veterans Affairs - Veterans Administration benefits, facilities, special programs.Food & Drug Administration's Office of Women's Health - science-based information about all products currently approved by the FDA to treat women's health conditions.Social Security Online - information about benefits, Personal Earnings and Benefit Earning Statement.National Institute of Health - Health Information Index, Consumer Health Information, Medline and Grateful Med access, Clinical Alerts.National Institute of Mental Health - provides information from the Federal agency that conducts and supports research on mental illnesses.



Health Resources
Alliance for Health Reform - a nonpartisan, nonprofit group helping educate elected officials, journalists and other shapers of public opinion about the roots of the nation’s health care problems and the trade-offs posed by various proposals for change.ClinicalTrials.gov - comprehensive registry of clinical trials for serious illnesses. Sponsored by the National Library of Medicine, the database has 4,000 studies at 47,000 sites across the country.Healthfinder - a mega site for health information sponsored by the Department of Health and Human Services. Excellent links section.MEDLINEplus® - comprehensive coverage of over 600 health topics. Features include: newswire updates, tutorials with sound and pictures, medical encyclopedia, drug information, directories of health facilities and professionals, and more.MedicineNet - information for diseases, treatments, procedures, drugs and more.National Organization for Rare Disorders - a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases.PubMed - provides access, free of charge, to MEDLINE. Over 40 millionsearches done each month. Includes state-of-the-art retrieval features such as "related articles," links to related databases, and links to publishers' full-text articles.



Legislation and Advocacy
National Governor's Association - bipartisan organization of the nation's governors--promotes visionary state leadership, shares best practices and speaks with a unified voice on national policy.Thomas - federal legislation tracking. Daily updates and full-text bills available.White House's ExpectMore.com - developed by the U.S. Office of Management and Budget and Federal agencies to assess the performance of every Federal program.White House Citizen's Handbook - a guide to the U.S. government.



Long-term Care
American Association of Homes and Services for the AgingHome Care and Hospice Agency LocatorNational Long Term Care Ombudsman Resource Center



Technology
Center for Accessible Technology - provides useful information on various types of technology as well as comparative reviews, and links to other resources.EASI (Equal Access to Software and Information) - provides information on assistive technology as well as links to product information. Virtual Assistive Technology Center - information on resources and also offers downloadable software.BIOTN (The Best Information on the Net) - site developed by librarians at O'Keefe Library at St. Ambrose University. The site offers information on adaptive technology, disability law, organizations and institutes and links to other useful sites.
Computer manufacturers also have sites that offer information on accessible technology. Some of the larger companies include Apple Computer's Disability Resources web site and Microsoft's Accessibility and Disabilities site.
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First Steps for New Caregivers

When you're starting out as a family caregiver, it's hard to know where to begin. Perhaps you've only recently realized that a loved one needs assistance, and is no longer as self-sufficient as he or she once was. Or perhaps there has been a sudden change in a loved one's health.

Now it's time to take action, and take stock of the people, services and information that will help you care for your loved one. The earlier you find support, the better.

Step 1

Start with a diagnosis. If your loved one is forgetful at times or has gone through a noticeable personality change, take him or her to a neurologist or diagnostic clinic. A thorough evaluation will rule out any reversible causes of dementia symptoms, such as depression, nutritional deficiencies, reactions to medication or infection. An early diagnosis of Alzheimer's disease, or another disease that causes cognitive impairment, has many benefits. First, treatment for Alzheimer's disease is most effective in the earlier stages and can buy more independence for your loved one. Second, knowing your loved one's diagnosis can help you plan ahead realistically. Learn as much as you can about your family member's condition. This information will confirm that you are not imagining things or exaggerating your loved one's behavior. Especially when you're dealing with dementia'learning about the diagnosis will help you keep in mind that it's the disease that is causing your loved one to gradually lose control over his or her behavior. Many books, videos and classes are available to inform you about what you can expect as your loved one's disease progresses.

Step 2

Talk with your loved one about his or her finances and health care wishes. If your relative is able to complete a Durable Power of Attorney for finances and health care, assist her or him in meeting with an elderlaw specialist to draw up these documents. This planning can help relieve your immediate anxiety and make you better prepared for the future. It can also start important discussions with your family members. If your loved one doesn't have the capacity to execute these documents, you will need further legal advice to learn about your options.

Step 3

At this stage, consider inviting family and close friends to come together and discuss your loved one's care. If possible, your loved one should be included in the meeting. List the tasks that are needed so they can be more easily divided up. Let everyone discuss their concerns, as well as how much and what kind of help each person can offer. As the primary caregiver, it's best for you to focus on accepting what assistance your friends and family are offering, even if it's not exactly what you had in mind. For more information see the FCA Fact Sheet called Holding a Family Meeting.

Step 4

Take advantage of community resources such as Meals on Wheels and adult day care programs. These resources are available so that you don't have to do everything yourself'and to give you a break. You can also see if there are caregiver classes and workshops offered in your community by calling FCA or your local Caregiver Resource Center or Area Agency on Aging. These education programs will help you feel more confident and make the time you spend caregiving easier for both you and your loved one.

Step 5

After all of this planning, don't forget what's most important: finding support for yourself. Caregivers often feel isolated as they take on more responsibility, and as their social lives move into the background. A support group is a good place to meet other family caregivers who have really "been there". You can attend support groups in your community, as well as through the Internet. Call FCA at (800) 445-8106 to learn about support groups, classes and other services for caregivers in your area, or visit www.caregiver.org.

Source: Family Caregiver Alliance

Caregiver Rally on the Capitol Lawn!

FOR IMMEDIATE RELEASE:

Contact: Sharyle Price Arizona

Caregiver Coalition

(928) 252-6900 Fax: (602) 542-6575

sharyleprice@cox.net

www.azcaregiver.org

Caregiver Rally on the Capitol Lawn!

Phoenix, Arizona, February 19th, 2008 — The newly formed Arizona Caregiver Coalition is hosting a Caregiver Rally on the Capitol Lawn on March 13th to celebrate and advocate for informal (unpaid) caregivers. These caregivers are often referred to as "family caregivers", even though one doesn’t have to be an actual family member to be an informal caregiver. There is a very good chance that most people in Arizona will speak to an informal caregiver today and not even know it! There are an estimated 570,000 caregivers in Arizona providing unpaid services to family members and loved ones. Those free services are equivalent to approximately $5.6 BILLION worth of in-home health care services, representing about 3/4ths of all in-home care provided! These caregivers deserve to be recognized and supported! "The Caregiver Rally on the Capitol Lawn on March 13th is designed to both celebrate informal caregivers and to create public awareness of the incredibly important role they play" explained David Besst, Caregiver Support Specialist for the State of Arizona. The Department of Economic Security, where Mr. Besst works within the Division of Aging and Adult Services, in conjunction with the Governor’s Advisory Council on Aging, has worked since late in 2006 to facilitate the development of a statewide coalition to support informal caregivers. This rally is the first public event for the Arizona Caregiver Coalition, and this will also be the first chance for the public to learn about the new Lifespan Respite Care Program being offered by the Division of Aging and Adult Services. That program is designed to offer a break to stressed caregivers who can’t access respite services through any other programs, and is based on HB-2789 that passed in last year’s session of the Arizona Legislature.

Caregivers who attend the rally will receive "toolkit" gift bags filled with great items to help them as caregivers and provide information for both them and the loved ones they assist. They’ll also be able to visit with support providers offering resources, with many different caregiving communities represented, such as kinship caregivers, caregivers of aging parents, caregivers of loved ones and spouses living with a disability, and tribal caregivers. Learn about the new Arizona Caregiver Coalition, and visit with KAET, Channel Eight, to learn about the upcoming film, "Caring for Your Parents", which will debut in April. There will also be great speakers, fun stuff and prize giveaways!

More about the Caregiver Rally and the Arizona Caregiver Coalition can be found at www.azcaregiver.org.

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Technorati Profile

Assisted Living For Your Parents

By: Ron King


Over the past few decades, there have been some issues with nursing homes and because of this they do not have a very solid reputation. Many elderly people dread begin placed in a nursing home because they are familiar with the bad reputation. There are good nursing homes, but even if you find one, your loved one will still have some losses, such as their independence, privacy and personal freedom. If someone is elderly, but doesn't yet need constant medical care, it's important that you don't make the decision to send them to a nursing home prematurely. There are other options.

The alternative to a nursing home is an Assisted Living Facilities, popularly known as ALF. These facilities are for people needing assistance with Activities of Daily Living (ADLs), but who want to live as independently as possible for as long as they can. Assisted living purpose is to bridge the gap between independent living and nursing homes.

Determining the Level of Independence

For those who are not able to live by themselves, but do not yet require constant care, assisted living centers are a great option. These facilities offer residents help with ADLs such as dressing, laundry, housekeeping, medication, bathing, and eating. A lot of these facilities can provide medical care as well, though this might not be as readily available to residents as it is in a nursing home.

Understanding the Differences

The decision on whether to send your loved one to an assisted living facility or a nursing home hangs on many factors, such as the following.

* Cost: Assisted living is rather pricey because individuals live in apartment-like settings. Nursing homes are cheaper because the elderly live in a more communal space, with little private space.

* Medicare is almost always available for someone in a nursing home. It may not be for someone living in Assisted Living Facility.

* Facilities: Assisted living facilities are focused on individuals. Nursing homes are focused on the collective group.

* Place: While assisted living facility is a place for one or few particular aged at a time, a nursing home houses a lot of patients. The former house an individual who is offered all the help and assistance he or she needs, while the nursing home provides far less individual care.

* Nursing homes are designed to care for people who have many health care requirements, and cannot care for themselves. Assisted living facilities are designed to assist elderly persons who can basically care for many of their personal needs themselves.

* In an assisted living facility, skilled nursing care is not usually available except on an as-needed basis. A nursing home is more like a hospital environment and provides full-scale, skilled nursing care.

* Assisted living facilities are designed to assist people in preparing meals, bathing, dressing or performing household chores. If your loved one is often confused or experiencing memory problems, assisted living may be the answer. If they have a debilitating disease or condition, they might need a nursing home.

The Well Being of Your Loved One

There are many factors to consider when deciding whether to use a nursing home or an assisted living facility, such as cost. However, your main concern should be the well being of your loved one. Besides, there are different ways of obtaining the necessary funds, such as financial aid. If you end up putting your loved one in a situation where they are suffering, all of the effort you might end up investing to resolve the situation will most likely heavily outweigh the money you might have saved.

Article Source: http://www.articlesnatch.com


About the Author:
For more info, see Long Term Care and Long Term Care. Ron King is a web developer; visit his website Authoring Articles. Copyright 2007 Ron King. This article may be reprinted if the resource box is left intact and the links live.