Choices ~ Healing ~ Love
August 1, 2004
Publisher & Editor: Gail R. Mitchell - grm4love
UPDATES AT THE SITE
INFORMATIVE CAREGIVING ARTICLES & INSPIRATION
MESSAGE BOARDS & EMAIL BAG
JOKES & HUMOR
I hope you are all enjoying your summer. I must admit, my schedule has gotten so bogged down, it was difficult getting this newsletter out to you.
There are a lot of articles on the new drug programs, legislation etc. As a non profit, we aren't really permitted to take a stand.. However, it is our intention to continue to empower each of you by providing as much information, be it pro's or con's so that you can advocate and make wise decisions for your loved ones.Each of us knows the saying "different strokes for different folks". Some things will work for some, some won't. If you have difficulty making decisions, check with social workers in local senior centers, friends, doctors, nurses, lawyer, medicare, medicaid, your accountants..depending on the issues at hand...check with community services and local programs in your areas that can best serve you. I encourage you not to make any of these choices by walking into them blindly.
There is so much to absorb and stay on top of it. Some of the articles may even astound you. However, it is important to view and weigh all of them .
With this in mind, I will keep the welcome short.. as usual, I trust you will find the information helpful.
May your journey be gentle and beautiful!
Empowering Caregiver's survey is focused on meeting the needs for our members in the community. Over the past 5 years our chats have been well attended. Recently, there has been a drop in attendance. In an effort to accommodate caregivers we are hoping to begin offering teleconferencing support groups on a regular basis where by you would dial up a specific number and connect with the group.
Friday night chat has been changed to 9PM EST
We invite you to join in our complimentary membership at: Join Us. While you are there, please take a few minutes to fill in the Caregiver Survey. Your input is extremely valuable and we will respect your privacy. Your support in filling in the survey will help us and our funders to reveal areas where programming is most needed and where it will be most effectivec. Survey.
Normally I have an oppotunity to really connect with members of the community and cull wonderful stories for the spotlight. I must admit I have slacked off. However, it's a wonderful process to reflect and see how much you have accomplished during the process as a caregiver. So many of us tend to dimmnish all the good that we do . So many who read your stories heal as the identify with what is being shared.
I would be very grateful if you were interested in sharing your story with us if you would contact me at grm4love
Or click on this link:
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.
Success Is Measured One Caregiver At A Time by Dr. Gema Hernández
It;s Just A Figure Of Speech by Mary C. Fridley RN, BC, Gero-Resources
Our thoughts, love and prayers go out to Herelt AKA Becky whose mother passed last week. They also go out to GrammaPookee4 who is Becky's cousin. Her Aunt was like her mother.
May your healings be gentle and nurturing.
As GrammaPookee4 posted, Becky is a special Angel; and all I can say is that it comes straight from the heart! Becky told me about the site and here I am. GrammaPookee4 wrote this for Becky. It says so much.
Her journeys just begun....
Understanding The New
On December 8, 2003, President Bush signed into law The Medicare Prescription Drug Improvement Act, now also known as Medicare Part D. This law is supposed to finally close that gaping hole called “lack of prescription drug coverage” in Medicare.
Did you notice something weird in that whole set up? No?
Since these are guidelines, there are lots of variations in enrollment fees and savings. The government has published the cost of drugs offered by the endorsed companies, as well as, their enrollment fees on a web site (www.medicare.gov) so that enrollees can compare plans. You can only sign up for one plan in a year.
Remember, this program in voluntary that means you don’t have to join. So, if you are currently getting help with your prescription and joining would not result in additional savings, then don’t enroll. Also, if you are getting prescription assistance through Medicaid, you can’t enroll in the program.
Dr. David Nganele Ph.D., MBA
Dr. David Nganele is a New York Times-profiled health education expert. He provides individuals with the knowledge and tools to help them become their own best doctor. He believes that “The More You Know, The Better You’ll Live.” He is also one of the premier writers and speakers on how to identify and manage the cost of healthcare while getting better services. His latest book is “Prescription Drug$; What You Must Know: From Avoiding Medication Errors To Saving On The Cost; A Manual For Your Peace Of Mind.” One of our featured columnists, he writes on topics which include prescriptions, healthcare and insurance
This course will provide support and guidance to caregivers, helping them move into this role with greater knowledge, awareness, and ease. Each session will begin with a presentation on relevant information and resources, followed by a question-and-answer and discussion period. You may sign up for the series, or for individual sessions. If you would like to attend these programs but are unable to do so due to caregiving responsibilities, our office can provide you with a list of volunteer programs and cost-effective alternatives for hiring an aid.
Changing times have redefined the role of Pharmacy Benefit Managers in the Medicare market. Pharmacy Benefit Managers play a role equivalent to the one performed by managed care companies towards hospitals. Rising costs have led many seniors to resort to extreme measures to meet their changing health care needs. PBMs recently have been accused of changing patients' medications without confirming with physicians and patients and profiting from the transactions. Currently, Caremark and Medco Health Solutions comprise the two largest pharmacy benefit managers in the United States and are both under investigation for charges. Article
If there was ever a time when our voices and choices should be heard, this is one of those times. If you are receiving this it's because I think you will take the 30 seconds to go and vote on this issue...and send it on to others you know who will do the same. There’s a bill called the Breast Cancer Patient Protection Act, which will require insurance companies to cover a minimum 48-hour hospital stay for patients undergoing a mastectomy. It's about eliminating the "drive-through mastectomy" where women are forced to go home hours after surgery against the wishes of their doctor; still groggy from anesthesia and sometimes with drainage tubes still attached. Lifetime Television has put this bill on their web page with a petition drive to show your support. Last year over half the House signed on. PLEASE!!! Sign the petition by clicking on the web site below and help women living with breast cancer get the care they need and reserve! There is no cost or monetary pledge involved. You need not give more than your name and zip code number. Petition.
The new Medicare Law covers a wide range of preventative services about to take into effect on January 1, 2005. New Medicare beneficiaries will now be reimbursed for initial physical examinations that include influenza and hepatitis B vaccines, mammograms, Pap smears and pelvic examinations and screening tests for prostrate cancer, colon cancer, glaucoma and osteoporosis. Medicare would also cover screening tests for cholesterol and diabetes for current beneficiaries. Congress hopes that the new changes in Medicare law would help doctors to diagnose early and recommend treatment. Article
The Bush administration released a draft of the new Medicare Prescription Drug Benefit regulations about to be implemented in 2006. The 1,956 pages of documents provide insight on the inner workings on how the law is going to take into effect. Billions of federal dollars are going to be spent to implement this new law. The draft is open for public comment for 60 days. Already, many aging advocate organizations, such as Families USA (and Global Action on Aging) have been deeply critical of the manipulation of information during the Congressional debate and the exorbitant pay-offs to drug companies and employers that the this new law will permit. Read more.
This detailed paper attempts to explore the implications of "doughnut hole" under the new Medicare Prescription Drug Benefit to be implemented in 2006. Medicare beneficiaries are left without coverage for expenses totaling from $2,250 to $5,100 referred to as the "doughtnut hole". Professor Anderson and colleagues propose to establish similar price controls existent in other developed countries such as Canada, United Kingdom and France. Professor Anderson hopes that such price controls will ensure better access to cheaper drugs. United States officials have to choose whether to introduce price controls and thereby reducing funding for Research and Development versus high drug prices for its citizens and increased funding for R and D. In 2003 alone, citizens of Canada, United Kingdom and France spent about 34-59% less than what American citizens paid for the same drugs. Doughnut Hole
The MetLife Mature Market Institute and the National Alliance for Caregiving have released the results of new survey research examining the challenges faced by long-distance caregivers. Report Les Plooster, Program Associate
The National Governors Association Center for Best Practices has released an issue brief providing an overview of strategies states are using to support family caregivers and to assist and support home-care workers.
(Westport, CT - Thursday 29, 2004) In order to provide assistance for an aging loved one, long-distance caregivers miss an average of 20 hours per month of work, according to Miles Away: The MetLife Study of Long-distance Caregiving released today by the MetLife Mature Market Institute and the National Alliance for Caregiving.
The study found that long-distance caregivers live an average of 450 miles and 7.2 hours away from the person for whom they provide care. They spend an average of $392 per month, which includes $193 on out-of-pocket expenses for caregiving and $199 per month on travel. More than half (51%) of those surveyed report visits at least a few times a month and almost half report they spend the equivalent of one full workday per week tending to their caregiving responsibilities. More than four in ten (44%) say they’ve rearranged their work schedules for caregiving. More than a third (36%) report missing days of work. Women are more likely than men to report missing work, but just as many men as women report rearranging their work schedules to provide care. Read more.
Washington, D.C. The National Association of Area Agencies on Aging (n4a) has expanded Making the Link: Connecting Caregivers with Services through Physicians by establishing partnerships with the American Academy of Ophthalmology (AAO), the American College of Rheumatology (ACR), and the Society of Geriatric Cardiology (SGC). These physician specialty organizations are joining medical associations representing primary care physicians, internists and geriatricians who are supporting family caregivers across the U.S. by serving on the Making the Link Advisory Board.
Making the Link, which is supported by a grant from the U.S. Administration on Aging, brings together two distinct but complementary systems the aging network and health care providers for the benefit of family caregivers across the country. Now in its second year, Making the Link connects approximately 200 Area Agencies on Aging (AAAs) and Title VI Native American aging programs with physicians in their communities. The goal is to increase awareness among physicians about the important health care role that family caregivers assume as well as the significant impact of caregiving on the health of the caregiver. Making the Link helps to make physicians aware of the vital role of local area agencies on aging (AAAs) in providing support to caregivers, including individual counseling, respite care, adult day services, home modification, and assistive technology. As a result, physicians are able to easily refer caregivers to these local agencies for assistance. More info
In 1999, Congress passed Public Law 106-4, "Nursing Home Resident Protection Amendments of 1999." In summary, the federal law says:
1. If a private-pay or Medicare patient lives in a nursing home while the nursing home is a Medicaid provider (most are), he or she cannot be discharged for financial reasons, even if the nursing home later withdraws from the Medicaid program, but continues to provide nursing home care to other types of patients. HOWEVER, nothing prevents the nursing home from moving the patient, without his or her permission, into a lower-cost room, including a ward-type room for several patients, or a special Medicaid section of the facility. But, the nursing home cannot transfer the patient into another nursing home without his or her specific permission.
2. A Medicare or private-pay patient who enters a nursing home when the nursing home is not in the Medicaid program can be discharged [evicted] when he or she is no longer able to pay the charges of the facility, even if the patient then qualifies for Medicaid. But for this type of discharge to be allowed, the nursing home must have informed the patient of this discharge [eviction] policy in writing, and received the patient's written acknowledgment, when the patient began residence in the facility.
As you can see, there are several "ifs" involved, including whether or how soon your loved one should apply for Medicaid, the federal/state program that pays about half of all nursing home expenses. If you or your loved one is in this situation, or will be shortly, we highly recommend that you discuss all of this at your earliest opportunity with an attorney who specializes in elder law. Check the yellow pages in your local telephone directory, or go to the National Academy of Elder Law Attorneys' web site at www.naela.org. On their home page, you'll find a link in the upper left corner (just below their logo) that will help you locate an elder law attorney.
In recent weeks, there have been conflicting reports describing how the Medicare-approved Prescription Drug Discount Card program has been working. Some reports indicate that seniors do not get any benefit out of the program and many are, in fact, not participating, while others have shown that some seniors have experienced significant savings already.
In an effort to find out how the program really is doing, I am asking members of The Seniors Coalition and Senior Congress to send in a brief summary of their experience with the Medicare-approved discount card.
There are so many messages being passed around on Capitol Hill by paid lobbyists that members of Congress don’t know what to think. I want to be able to share with them specific examples of how the Medicare-approved Prescription Drug Discount Card program has helped seniors or where the program falls short.
So, if you (a) have signed up for a prescription drug discount card and (b) have used it, please take a moment to email me to let me know how your experience has been. Have you saved? Has the card hurt you in any way? Was there no benefit given by the card you have? I want to know so I can let the members of Congress know the real story.
You can email me at email@example.com. Thanks for your help in this effort.
All my best,
You may register free of charge to become a member of The Senior Congress by going to their web site. www.seniorcongress.org
Are You Ready To Be A Kid Again, Doing What You Did....Again?
To Infinity and Beyond~ For kids in grown up bodies. Free your inner 'kid' to do what it does best, 'enjoy life in greater ways'. Explore more of your infinite nature. Your inner 'kid' knows the way. Join Harvey and a bunch of the 'coolest' people you will ever meet for one of the best times you will ever have.
Before there were thoughts of limitation programmed into your head by others, there was the truth of your childlike innocence that was not afraid to think 'outside the box', not afraid to take risks, knowing something 'indefinable' was at work nagging you to explore more of your infinite creative nature. Feel any nagging lately? Aches, pains, and creative frustration do not have a chance with a massive dose of fun and outrageousness.
A weekend that will empower you in the most delightful, delicious, and de-lovely ways." "Have some fun while on the run and time won't be your master. Not only that, but it's a fact, you'll get there much faster."
UCLA CONFERENCE GROUNDS, Westwood,Los Angeles, California
To Infinity And Beyond!
SAN FRANCISCO--July 22, 2004--The National Center on Caregiving at Family Caregiver Alliance has issued a new policy brief, "A Call for National Leadership in the 2004 Campaign: Family Caregiving and Long-Term Care - A Crucial Issue for America's Families."
The policy brief is available free on the FCA site, or in print by sending $25 to Publication Orders, Family Caregiver Alliance, 180 Montgomery St., Ste. 1100, San Francisco, CA 94104.
S. 2545 Advance Directives Improvement and Education Act
The Advance Directives Improvement and Education Act (S. 2545) was introduced on June 17 by Senators Bill Nelson (Florida) and Jay Rockefeller (West Virginia). Senator Nelson was moved to write this legislation by the plight of Terri Schiavo, a Florida resident, who has been in a persistent vegetative state for 14 years and had not prepared a written record of her health care preferences. Senator Rockefeller is a long-time champion of improving end-of-life care.
Last Acts Partnership strongly supports this bill and has worked closely with Senator Nelson’s staff on its development.
S. 2545 contains the following key provisions:
1. Encourages advance care planning for Medicare beneficiaries by covering a consultation with their physician each year exclusively for the purpose of discussing medical options and other issues involved in the preparation of an advance directive. Consultations could be repeated every year for a healthy individual and more frequently for a person diagnosed with a serious, life-limiting or terminal illness.
2. Provides for the portability of advance directives so that one legally executed in any state would be honored in any other state, except in a case where the stated wishes of the individual would violate the laws of the state in which it is presented.
3. Provides the U.S. Department of Health and Human Services (HHS) with $25 million to increase public awareness of the importance of advance directives, improve the public’s understanding of the various situations in which they would be beneficial and advise individuals about ways to assure their advance directives are honored. HHS would also, directly or through grants, establish an information clearinghouse to make readily available, free or at nominal cost, state-specific advance directives and publications on various aspects of end-of-life care decisions and other medical concerns.
Below please find the direct link to the action alert from our "End-of-Life Care Action Center" - we encourage you to either add this to your action center http://capwiz.com/lastactspartnership/issues/alert/?alertid=6041606&type=CO
The American Society on Aging (ASA) will present two free web events to address the issue of family caregiving. The first, Policy Trends to Support Family Caregivers, will be held September 14, 2004, 10 a.m. (Pacific Time).
A web seminar, "Family Caregiving: Current Challenges for a Time-Honored Practice", will be held September 21, 2004, 10 a.m. (Pacific Time). Kathleen Kelly, Executive Director of Family Caregiver Alliance, will present at both events. More info:
Hartford Financial Services Group and the MIT AgeLab have created a new guide to help families worried about an aging parent’s ability to drive safely. The new guide, We Need to Talk: Family Conversations with Older Drivers, is based on a study of older drivers’ attitudes and driving habits. It offers families practical information to help them advise their loved ones on whether it is time to limit or even give up driving.
This 24-page guide provides information to help families initiate productive and caring conversations with older adults about driving safety, as well as practical information to help them advise loved ones on whether it is time to limit or give up driving. Suggestions are based on research with drivers over the age of 50, including a nationally representative survey; focus groups with older adults who have modified their driving; and interviews with family caregivers of persons with dementia. Download: or by write to: The Hartford, We Need to Talk, 200 Executive Blvd., Southington, CT 06489
The Warning Signs, a checklist containing 30 driving behaviors to watch for, ranging from minor indicators, such as riding the brake and hitting curbs, to concerns for immediate action as failure to stop at a red light or confusing the gas and brake pedals. We Need to Talk recommends that families look for a pattern of problems, not simply an isolated incident. The Hartford/MIT AgeLab study found that older drivers were more willing to listen to those who had driven with them.
“Getting There,” a worksheet containing a list of transportation alternatives and advice on what questions to ask service providers.
Through their website, you can learn your rights as a taxpayer and parent as well as to which programs, monies and more your child may be entitled. ParentAdvocates.org is an online newsmagazine which seeks to inform and empower parents or guardians of children. They believe that they , as a group, must hold their education leaders and elected officials accountable for the actions they take vis-à-vis your children, and they will tell you what those actions are as well as what can be done to protect and nurture your child while in the system. When your children do not receive a free and appropriate education and are ignored by politicians we need to take action immediately and not depend on others to resolve the issues at hand.
Use this website interactively. A national conversation by concerned citizens is a force that no government can ignore. More info
The Caregiver's Respite Care Assistance Program was established to provide information, counseling, and financial assistance to caregivers of people with Alzehimer's disease and related dementias in order to help them obtain respite care services. Respite care is a form of short-term assistance for the primary caregiver;it provides relief to help reduce the heavy demands associated with caring for someone 24hrs a day. There are no income requirements for program eligibility, but the primary caregiver and the person with AD must live together. Respite care services frequently utilized by families are:
For more information about how to apply for the Caregiver's Respite Care Assistance Program, please contact Linda Van Blarcum, Coordinator of HelpLine Services, at 1-800-883-1180.
Cash Back* offers are valid for purchases made through December 31, 2004. Cash Back requests must be postmarked no later than January 31, 2005 to be eligible for a Cash Back check for the 2004 Program. For the 2004 Cash Back* Request Form, go to FORM. OR to request one, CONTACT US or call us toll free at 1-866-327-8340 or write to us at P.O. Box 1206, Charlestown, RI 01813. to enroll please go to : Form. For their guide :
Visit their website at www.aafa.org and find the latest information about asthma and allergies, watch free interactive educational videos and even “Ask the Allergist” on their website.
The American College of Allergy, Asthma, and Immunology (ACAAI) is conducting free asthma screenings at more than 300 locations across the country. Visit screenings or call 1-800-7-ASTHMA for more information.
North Bronx Westchester Neighborhood Restoration Association, Inc. (NBWNRA) is pleased to announce that a support group for adults caring for their elderly parents or relatives will begin in January 2004. The Caregiver’s Support Group is a free program sponsored by State Senator Guy Velella through the North Bronx Westchester Neighborhood Restoration Association, Inc. (NBWNRA), which helps caregivers cope with their increased responsibilities and obtain the information they need in a supportive environment.
NBWNRA’s free Caregiver’s Support Group is an eight-week program facilitated by Ed Friedman and co-facilitated by Maria Meli. It will be offered on Monday evenings beginning January 26, 2004, 6:30 -7:45 p.m., at 1136-1138 Neill Avenue (corner of Williamsbridge Road). Pre-registration is required prior to the first session. For information and to register contact Melissa Rodriguez at (718) 823-7704.
As you know, last year’s inaugural events were both very successful, with hundreds of sites participating across the country. This year, our initiatives during Alzheimer's Awareness Month will be more important than ever. There is a great deal of attention on Alzheimer's disease right now, and our activities in November will help to maintain and build on that focus. Furthermore, thanks to our united efforts throughout the past two years, AFA has achieved enormous momentum and recognition. Our growth and success has amazed even us. The timing is right for us to take advantage of this momentum and push forward on all fronts in order to fulfill our important mission.
National Commemorative Candle Lighting - Tuesday, November 10th.
National Memory Screening Day - Wednesday, November 16th.
AFA will send instructions and materials for these events, including press release templates, posters and memory screening educational materials, to all participating sites. We will assist you across all areas to help you seamlessly facilitate these events and gain maximum participation and media exposure. We look forward to your participation.
If we have not found heaven within, it is a certainty we will not find it without.
There is no instinct like that of the heart.
At any moment, you have a choice that either leads you closer to your spirit or further away from it.
Every heart that has beat strongly and cheerfully has left a hopeful impulse behind it in the world, and bettered the tradition of mankind.
Robert Louis Stevenson
"Life is not measured by the number of breaths we take, but by the moments that take our breath away. For as we grow older, we realize it is not the things we did which we often regret, but the things we did not do"
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I'm responding to your letter on the poverty of caregiving. My entire family: husband and 5 children all suffered financially from my stroke. The medical bills devastated my husband and I as we were plunged into instant poverty. One year Medicaid picked up our bills and denied us the Medicaid the next year because we had no unpaid bills (they had paid them) I guess every other year they will consider you. Why must a family be so financially devastated by aging parents or disease? Two years after my paralyzing stroke my husband had his foot amputated. Deeper poverty followed. All savings and investments were gone. My daughter 31 became an instant caregiver with no training or preparation. As most caregivers, she took charge of my care. The other children took turns buying our medications and physically helping out. This is an abomination for functioning families to have no assistance with in home help or financial burdens. Our problems became our children’s’ problems. They all did what they could. Seems no agency was concerned with their enormous burdens. As you said the Reagan’s had money and means to deal with difficulties. If we just had a little help for caregiver’s families and the financial means to take up some slack it would make a powerful impression. I know as a patient what an effect my illness has had on everyone that knew me. : Mary OBX NC
I really appreciate being able to read about and talk about the emotional side of all this, it's not just blood numbers and treatments and doctor visits. We kind of get lost in the shuffle and suddenly look up and say "what the heck is my name again.." and then we know it's time for some self-care. I love that about this board. I am SO grateful to know I'm not the only one feeling angry, irritable, guilty about the situation. Take care all, Bron
Matt went into Doc Steven's office for his annual checkup, and the Doc asked if there was anything unusual he should know about.
That left it pretty wide open, so he told the Doc that he found it real strange how his suit must have shrunk just sitting in his closet because it didn't fit when he went to get ready for a wedding recently.
The Doc said, "Suits don't shrink just sittin' there. You probably just put on a few pounds, Matt."
"That's just it, Doc, I know I haven't gained a single pound since the last time I wore it."
"Well, then," said Doc, "You must have a case of Furniture Disease."
"What in the world is Furniture Disease?"
"Furniture Disease is when you reach that stage in life when your chest starts sliding down into your drawers."
A man walking along a California beach was deep in prayer. Suddenly, the sky clouded above his head and, in a booming voice, the Lord said, "Because you have TRIED to be faithful to me in all ways, I will grant you one wish."
The man said, "Build a bridge to Hawaii so I can drive over anytime I want."
The Lord said, "Your request is very materialistic. Think of the enormous challenges for that kind of undertaking. The supports required reaching the bottom of the Pacific! The concrete and steel it would take! It will nearly exhaust several natural resources. I can do it, but it is hard for me to justify your desire for worldly things. Take a little more time and think of something that would honor and glorify me."
The man thought about it for a long time. Finally he said, "Lord, I wish that I could understand my wife. I want to know how she feels inside, what she's thinking when she gives me the silent treatment, why she cries, what she means when she says nothing's wrong, and how I can make a woman truly happy."
The Lord replied, "You want two lanes or four on that bridge?"
A 94 year old woman was arrested while jogging down the street. The police thought she was an escapee from a local nursing home.
THAT'S IT FOR THIS ISSUE
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