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Choices ~ Healing ~ Love Life can be likened to a string of moments taking us from one instant to the next, with us always being present in each significant period. Yet most of us go through our harried day without paying attention to what is truly happening - what in fact is really authentic for us. May your journey be gentle and beautiful! Valentine's Wish From NOFEC National Organization For Empowering Caregivers NOFEC We invite you to join in our complimentary membership at: Join Us. While you are there, please take a few minutes to fill in our Caregiver Survey. Your input is extremely valuable and we will respect your privacy. Your support in filling in our survey will help us and our funders to study the areas where programming is most needed and where it will be most effective. Survey. ~ If you are a family caregiver residing in New York City, please contact us to see if you are eligible for respite provided by our trained volunteers. Through a grant provided by Robert Wood Johnson Foundation and additional funding through Marble Collegiate Church and the Alzheimer's Foundation of America, we are now offering respite services to those caregivers residing in our catchments' area consisting of Fifth Avenue to the Hudson River and from West 59th street to Houston Street. For more information or to become a member of our coalition or to volunteer your gift of time, please contact us at 212.807.1204. We look forward to hearing from you. ~ We offer hosted chats with Ken, Alison, Miriam, Mardell and Gail: Sundays through Thursdays from 9PM-10PM EST. There is a wonderful community of support and we invite you to take the opportunity to join in with us. ~ If you are interested in submitting an article(s) please go to: Submit. You will find a form for submitting your article, bio/profile, copyright permissions, etc. Please review our guidelines for acceptance, submit and we will notify you upon acceptance.
~ Our thoughts and prayers go out to both Kaymac and Plink on the losses of their mothers. May your healing be gentle and nurturing. May you find the strength to reclaim your lives as your mothers would have wanted you to. ~ Practical Lessons for Negotiating Cancer: Lessons For Negotiating The Health Care System Experience is often the best teacher, even if you are not seeking knowledge. Unfortunately, Joan and I were taught quite a bit during our thirty-two months of negotiating the health care system. Since each person's experience is unique, what may have worked for Joan or me is not necessarily right for others. Still, I summarize some practical lessons here, thinking they may be beneficial to some. Understand that you are in a marathon, not a sprint. When a cancer diagnosis is made, the tendency is to want to do something about it. Right away! But as we learned, it was important to take time to understand treatment options, to select an oncologist, to seek second and third opinions, to collect our emotions, to put supports in place for our children and ourselves. Take time to explore carefully treatment choices. Get second and third opinions. Especially during initial diagnosis, it's important to take a deep breath and not rush into treatment without being sure that necessary diagnostic information is complete. Try to keep as many options open as possible. Understand that outstanding physicians may not always have the knowledge that highly specialized docs at regional cancer centers have. As was the case for us, a surgeon like Dr. Fong, who may perform 150 liver surgeries annually, may be able to do liver surgeries that excellent general surgeons would not consider possible. Understanding this, knowledgeable and secure physicians welcome the insights and suggestions of other reputable specialists. If your treating doctor is not open to second or third opinions, then you may want to find another doctor. Information is your friend, especially good information presented in ways you can hear. It is difficult to hear that you have cancer, or that you are no longer in remission, or that there is a "suspicious" finding. Waiting for test results is difficult as they may confirm suspicions of a major health problem. For many of us, these are periods of great anxiety and fear. In the face of such information, ignorance may seem like bliss. But lack of information robs you of opportunities to effectively treat a disease, limits choices about how to use your time, takes away opportunities to share some of life's most intimate moments with those you love. There are many ways of gathering information-from health care providers, from others who have walked down similar paths, from the Internet (see appendix B) and research journals. Assess what information you need to make good choices. Assess how you would like that information given to you. Do you want to receive test results as soon as possible (for example, a "cold" read from a radiologist right after a CT scan)? Do you want to know the survival data or not? Think about whether you might benefit from gathering information available on the Internet. Talk with your health care providers. Be clear about your needs. Be clear that while information is your friend, it may not always be correct. You are not a statistic. The data that yield estimates of survival time, progression-free survival, or reoccurrence are based on past research. The data refer to averages. You are not an average; you are a person. No one can predict how long you will live or what the outcomes of an intervention will be. You may (or you may not) find knowledge of survival data useful to your decision making. But, no matter what, do not treat yourself or allow yourself to be treated as a number. Learn to ride the "roller coaster." In the world of cancer, at least the part of that world that we inhabited, we learned that things are often not as bad as they at first seem. Conversely, often they are not as good as they might appear. Expect many ups and downs. Bite your tongue, cool your heels, keep your eye on the target. Before Joan's illness, I was much quicker to anger when kept waiting for long periods of time for an appointment or when faced with inconsiderate treatment. Now that the stakes were high, however, I learned to pick and choose my battles carefully. I also recognized that physician schedules are not easily maintained. The extra time an oncologist gives to a patient at a crucial time or that a surgeon spends to complete surgery may throw off their schedules. Sometimes you or a family member are that patient that needed the extra time to read the full Article. Erick Kingson Eric Kingson is a Professor of Social Work and Public Administration at Syracuse University. Professor Kingson's primary research interests include generational equity issues, the aging of the population, older worker policy; Baby Boomers; intergenerational programs; cross-generational obligations and Social Security. It can be order online directly from Syracuse University Press at: Syracuse University Press or . It can also be purchased at Barnes and Noble and other online stores. ~ Top Of Page
Medicare Interactive (MI), Whether recovering from an accident or dealing with a chronic ailment, Medicare may pay for care and treatment in your home. Medicare will cover many of the costs related to homecare if you need certain skilled services -- physical, speech, or occupational therapy services or nursing services. A doctor must first certify that you are homebound and that home care is medically necessary. Your care must be provided through a Medicare-certified home health agency. If these criteria are met, the home health agency will create a plan that describes how often, over what period of time, and the types of services that will be provided. A doctor has to approve this plan which can include up to 35 hours of home health care over a period as long as 60 days. An indefinite number of new plans can be written until homecare is no longer necessary or recovery is complete. Medicare will cover the full cost of a home health aide as long as you are receiving skilled nursing care or therapy services in the home. Home health aides provide personal care such as help dressing or bathing. Medicare will also cover the cost of services that address social and emotional concerns related to an illness, the medical supplies used by the Medicare-certified home health agency such as wound dressings, and evaluations by a skilled nurse or therapist. Medicare will also pay 80% of the Medicare-approved amount for some medical equipment, like a wheelchair or walker. For more information on home health agencies, the requirements to qualify for the home health benefit, and more resources Medicare can offer, log onto Medicare Interactive at National Organization for Empowering Caregivers website at details ~ A new website announced by the Centers for Medicare and Medicaid Services in December 2005 is intended to help professionals and others find online information about the two federal programs with the fewest possible number of clicks. An online demonstration is available to help users navigate the new site, located at: CMS ~ Funding is available for communities to initiate, expand, or replicate collaborative community-based programs that address one or more of these top needs of family caregivers: respite care, skill development,i nformation. education, and caregiver health and well-being. Applications are being accepted from organizations in the following states only: Colorado, Georgia, New Jersey, Tennessee and Texas. Selected organizations will receive a $40,000 one-year grant and both on-site and off-site technical assistance provided by the program staff. Applications for the 2006 funding cycle are being accepted until 5:00 PM. EST on March 31, 2006. Please visit www.RosalynnCarter.org for additional information or contact Tegrin Averett, Program Liaison, at 229-931-2758 or via e-mail at: Averett. . ~ Oregon is the only state in the Union that allows doctors to help terminally ill patients end their lives. To learn more about this assisted suicide law, please go to: Assisted Suicide ~ A new online resource developed By the National Care Planning Council as a public service for organizations as well as th public. It is written by eight experts and organized into 35 chapters. There is also have a section on helping seniors with the new Medicare prescription drug benefit. Guide Thomas Day
Alzheimer’s Foundation of America AFAQuilt to Remember The Alzheimer's Foundation of America is creating a national quilt of remembrance and care: the AFA Quilt to Remember. The quilt is the first-ever national dementia-related quilt on this grand a scale that will expand in size with ongoing contributions. The thought-provoking panels will pay tribute to individuals with dementia—those who have passed and those who are living, as well as family caregivers, other family members and healthcare professionals committed to the cause. Individuals and organizations across the country have the opportunity to create their own unique panels. These self-made panels of remembrance, stories of hope and perseverance, allow loved ones to continue to speak and provide families with an outlet to creatively express their caregiving journeys. With the help of hundreds, perhaps even thousands, of panel makers across the country, AFA will proudly display this profound work of emotional art at conferences, events and historic locations in cities across the U.S. in the years ahead. This heartfelt project will be unveiled for the first time in the fall of 2006. Stay tuned for more details on the AFA Quilt to Remember Tour! For more info, please go to: ~. Tax season is around the corner and now is the time to begin thinking about researching the AARP Foundation’s Tax-Aide program. Free tax counseling is offered for taxpayers with low and middle income, with special attention to those aged 60 and older. This will be available from February 1, 2006 through April 15th, 2006. For more inforation call 888.227.7669 or visit the website Look Up Local Alzheimer's Disease Support Groups. Support
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No act of kindness, no matter how small, is ever wasted. Aesop He who cannot change the very fabric of his thought will never be able to change reality. Anwar al-Sadat If we could see the miracle of a single flower clearly, our whole life would change. Buddha Life loves to be taken by the lapel and told: 'I'm with you kid. Let's go. Maya Angelou We either make ourselves miserable, or we make ourselves strong. | |||||||||||||
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