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Choices ~ Healing ~ Love
March 1, 2004 Publisher & Editor: Gail R. Mitchell WELCOME JOURNAL EXERCISE UPDATES AT THE SITE CAREGIVERS' CONCERNS NEWS INFORMATIVE CAREGIVING ARTICLES & INSPIRATION MESSAGE BOARDS & EMAIL BAG JOKES & HUMOR DISCLAIMER  NEWSLETTER ARCHIVESI had the opportunity of attending the Families and Health Care Project of the United Hospital Fund that sponsored a conference called "Family Caregiving in a Changing World", here in New York City. I must admit that I thought it would consist of local attendees but it drew quite a diverse audience from across the nation and Canada. Carol, Levine who is the Director of The Health Care Project spoke about how far we have come in the caregiving arena and of the journey we still face. The program featured a diverse panel of family caregivers who described their caring experiences for their chronically ill child or parent. Other topics were Family Caregivers on the job, ADL's and IADL's; a wonderful theatrical presentation, "Caring For Me, Caring For You" that was not only powerful but informative, leaving a huge impact on those who may not have understood the needs of a caregiver, and issues surrounding the discharge from services. There was a wonderful presentation of how caregiving is growing in the media, with a heartwarming presentation by Rafael Pi Roman, who is the host of New York Voices on our PBS station. In speaking with Mr. Roman after his presentation, I commented on his openness in sharing his own vulnerability. He smiled and said, "I don't normally let the vulnerable side out in public." During a paneled discussion on the future trends in caregiving; what we could do to pass more legislation on long term care policies, paying family caregivers and caregiver support, I found myself building such anger inside as I listened to the concepts that the Federal Government wanted the State Government to take over the burden and vice versa. Passing the buck just didn't appeal to me in anyway shape or form. I had to let my voice be heard. I went to stand online in the back of others waiting to speak at the microphones. The Moderator stated that there was very little time left and to make our questions or statements as brief as possible. One gentleman rambled on and I remember thinking, get him off. There were three more people in front of me and the moderator said this would be the last one. The woman, who already had spoken on several occasions, felt my urgency and allowed me to speak. I got nervous, thinking everyone would boo me off. All I remember is getting up and not introducing myself as a founder of an organization but as a caregiver, sharing the horrific experiences I have gone through this past month as a knowledgeable advocate for my mother, navigating the system. I explained how I felt: Firstly the hardship of my mother being dismissed from the hospital with a low salt level which caused her confusion as she entered the nursing rehab facility who knew absolutely nothing about her needs and that supposedly her pneumonia was cleared, but the doctor assigned to her in the nursing rehab gave her more antibiotics because she had pneumonia according to an x-ray she viewed, (an x-ray from a date that my mother hadn't been in the facility and none had been taking from the time she entered until the time she was prescribed the antibiotic.) At a daily fee Medicare was paying almost $400/day plus all the additional expenses she was incurring, her primary reason for entering the rehab was for pulmonary rehab. Rehab? In my presence upon her admittance, she was brought six nebulizers that were broken; three condensers for oxygen, which didn't work properly, and finally a dilapidated, filthy oxygen tank. Mind you, my mother was receiving oxygen 24/7 in the hospital. She was without constant oxygen for almost four days before they brought her a continuous flow of oxygen. I remember telling them that whether it be myself or a paid aid living in 24/7 at $500 a week plus under $500 a month for oxygen 24/7 at home and perhaps a couple of grand for rehab on the outside could save the government close to $7-10,000 per month. We along with millions of other caregivers, were already saving the government billions of dollars, and they recklessly use monies to provide services of this nature. My other point was that her nebulizer machine, which was at home, had not been used in almost a month since she first entered the hospital; the monthly rental fee Medicare was billed at was $75.00. My mother has had a nebulizer for over 4 years. You can go out and buy a nebulizer for $125.00. The rental fees were assessed at close to $4,000 for the 4 years. Who's fooling whom, I asked...I was unnerved... I could have gone on and on at the wasted monies I observed and not a penny was going to the caregiver who was keeping their loved ones out of these facilities. What would the government do if all of the millions of caregivers decided to put their loved ones into a facility today, all at one time? What would the government do then? To my amazement, an overwhelming applause filled the auditorium. As I walked back to my seat, crying from the emotional release at having been heard, I thought to myself, this is so painful for so many of us, to have to use all our energies to advocate for loved ones, fighting with so little energies left inside us, but you know, it is the only way. We must all let our voices be heard. It' s easy to say I am not going to bother; it won't matter anyway. All you have to do is write one detailed letter and send it everywhere, to your congressman, mayors, president, governor, television networks. The more of us that express our needs, the more we will be heard and the more we can be assured that not only will our loved ones be cared for properly, but that as we age in place, should we need care, hopefully ours will be as well. As we walked out for the break, men and woman from all walks in life of caregiving, came up to me, introduced themselves and thanked me from sharing for they too, were fearful of expressing their own needs as caregivers of a loved one in their work positions. They were the professionals in caregiving who were powerful enough to help change the way caregivers needs are met. Hopefully, they will now have the courage to come out of the closet and express their needs as well. After the conference, I went up to advocate for my mother to get her into the proper rehabilitation facility. They had denied her admittance twice because of the way the nursing home worded the PRI. Without going into more of the details at 6PM a social worker covering for my mother's social worker who was on vacation until next week came in to tell us my mother had been accepted and would be transferred on Monday. My mother and I looked at one another, eyes wide open: our prayers had been answered. It was worth all the “you know what,” we went through. We giggled and laughed like little school girls with so much gratitude.... we both encourage you all to not give up... May your journey be gentle and beautiful! 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 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. Empowering Caregivers Chats Hosted chats are on Monday evenings and Thursday evenings. Dee is still ill and Prairie Gal has been consumed with caring for her dad and helping with her brother in law. If you would like to volunteer as a host, please fill in our application at: Chat Host. If you would like to volunteer moderating the boards, please fill out our application at: Moderator. Mary C. Fridley Care Givers and Grief in the 21st Century by Mark Mercer 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. ~ Sitting Fit For Caregivers And Those They Care For When on an airplane, the instructions given by the flight attendant always include something like “Put on your own oxygen mask first before assisting others.” Have you noticed the far-reaching wisdom behind that directive? Susan Winter Ward Susan Winter Ward is an internationally recognized certified yoga instructor who has created the "Yoga for the Young at Heart" Collection; accessible yoga programs in books, videos (VHS & DVD), CDRom, audios and on TV, offering inspiration and instruction for a healthier life through yoga.Nine 3-5 minute segments of seated stretching & deep breathing helps to maintain your strength & flexibility while relieving stress & tension from sitting too long, working non stop and worrying. For more information: New: E-course : Six Weeks to Improved Relaxation: Sign up today for a free e-mail course to help you relax! Each week for six weeks, you'll receive a brief e-mail that describes one specific relaxation exercise, including diaphragmatic breathing, guided imagery, journaling, self-hypnosis, and more. Practice that exercise as recommended in the instructions for one week. The next week, you'll receive the next exercise that focuses on a different method. By the end of six weeks, you'll have acquired six new techniques to help you relax and can choose the one that suits you best. The course is individualized so that you can begin with Lesson One at any time, and you may always unsubscribe if you wish. Join From Melissa C. Stoppler: "We all experience stress, and managing it can help us to lead healthier and more rewarding lives. I hope to include here the best educational, self-help, and management resources available on the Web." Melissa C. Stöppler, M.D ~ Jane Gross, a caregiver herself, wrote an interesting article that appeared in the Friday New York Times on who was going to care for the caregivers who were single, widowed, divorced and without children.Many a caregiver has been giving careful consideration to this topic. Read the article: ~ New Jersey Health Decisions is pleased to announce its 11th annual bioethics conference, "Healthcare Professionals and Family Caregivers: Sharing the Burdens of Care for the Dying." This program will be held on Friday, April 16, 2004 at the Woodbridge Hilton in Woodbridge, N.J., from 9 a.m. to 5 p.m. The keynote speaker is Myra J. Christopher, President of the Midwest Bioethics Center. Other speakers include Joseph Fins, MD; Naomi Karp, JD; Tia Powell, MD; and Gloria Ramsey, JD, RN. The Woodbridge Hilton is accessible from New York and Philadelphia by Amtrak train. For more information and a program brochure, please call (973) 857-5552 or e-mail HealthDec@aol.com. ~ Never afraid to take on the serious issues, Pauline Phillips — the woman known to the world as "Dear Abby" — was one of the first to make the public aware of the private pain of Alzheimer's disease. To read the complete article: Dear Abbey ~ Larry Atencio knew his father had had diabetes for years. But he was still shocked by what he saw a year and a half ago, when he went home to visit. To reat the complete article: USA ~ SAN FRANCISCO — Every weekday at 6:45 a.m., Roberta Moore quietly pads into the next bedroom and pulls back the curtains to let in the first light. Thus begins the nearly three-hour ritual of readying her 89-year-old mother for her day. To read the entire article: USA ~ The National Institutes of Health said on Tuesday it had stopped a large trial of women taking estrogen replacement therapy after finding the pills not only failed to improve their health but may have slightly raised the risk of strokes. To read the entire article: trial ~ The Lifespan Respite Care Act would authorize funds for competitive grants to states and other eligible entities to make respite available and accessible to family caregivers, regardless of age or disability. The bill requires grantees to identify, coordinate, and build on existing respite efforts at the state and local levels. The Lifespan Respite Care Act would help support, expand, and streamline planned and emergency respite, respite worker and volunteer training and recruitment, caregiver training, and program evaluation. Please make sure that you contact your national representative and tell them to support the Lifespan Respite Care Act (S. 538, HR 1083) already passed by the US Senate. www.Congress.org and read more at Lifespan. ~ March is National Colorectal Cancer Awareness Month. Colorectal cancer is a disease in which cells in the colon or rectum become abnormal and divide without control or order, forming a mass called a tumor. The exact causes of colorectal cancer are not known. However, studies show that certain factors such as age, diet, polyps and others can increase a person's risk of developing colorectal cancer. People should talk with their health care providers about when to begin screening for colorectal cancer, what tests to have, the benefits and risks of each test, and how often to schedule appointments. For information on low or no cost colorectal screening, or to find out more about colorectal cancer and its risk factors, please contact the National Cancer Institute's Cancer Information Service at 1-800-4-CANCER. Online assistance is also available for E-mail inquiries and through the LiveHelp service at Cancer.gov. ~ I am a writer/editor in New York City researching a story on family caregivers, in particular caregivers who have had to rise above an abusive past with a parent in order to care for them through illness and/or old age. I am interested in carefully and sympathetically exploring this phenomenon, one in which women who have been sexually abused by fathers ultimately end up becoming their caregivers, or children who were once verbally abused by parents find themselves in the position of nursing these family members through illness. I think this relationship dramatically illuminates the conflicting emotions and generosity required of a family caregiver. All names will be kept confidential, unless given explicit permission otherwise. ~ This conference is for parents and professionals for the care, treatment, and recovery of children with autism. The conference organizers are themselves parents of children with autism. Parents are, and must remain, the driving force of the autism community. The issues are too sacred and the stakes too high to delegate to outside interests. Autism One features over 100 speakers: many of the world's leading researchers, educators, practitioners, agencies, and parents. Learn about the latest treatments, your rights when dealing with school districts, the best ways to handle insurance companies, how to petition government agencies, along with a host of other pressing issues. In addition, leading parent-advocates and autism organizations will be on hand to present and inform For more information: Contact:Edmund Arranga at Ph:714.680.0792 E-mail or visit their site at: http://AutismOne.org ~ Senator Larry Craig (R-ID), chair of the U.S. Senate Special Committee on Aging, has introduced legislation to provide a tax credit for caregivers. The Senior Eldercare Relief and Empowerment (SECURE) Act (S. 2072) provides a 50% tax credit for qualified expenses that exceed $1,000 for care provided to individuals age 65 or older. Senator Craig highlighted the need or such tax relief at a February 10, 2004 hearing before the committee. Tax Credit ~ Find all the information you need to begin navigating through the new Medicare legislation. How does the 2003 Medicare Modernization Act change my Medicare coverage? What are the Medicare premiums and coinsurance rates for 2004? Medicare Personal Plan Finder – New 2004 Data Prescription Drug and Other Assistance Programs Determine your Medicare eligibility and enrollment status. Helping you compare health plan options (including Medicare + Choice and supplemental insurance plans) in your area. ~ The Last Acts Family Committee developed a comprehensive resources guide to assist family caregivers find the information they need to better care for those facing the end-of-life. The guide, called Last Acts Consumer/Family Resources for End-of-Life Care, contains information from numerous organizations offering a variety of caregiver resources including books, videos, web sites and brochures. To order the guide, send an e-mail to lastacts@aol.com and type “Family Compendium” in the subject line, and be sure to include your name and full mailing address in the message.To view the guide, a PDF file is available on the Last Acts Web site at: Resource Guide. ~ The Joslin Diabetes Center, a nonprofit affiliate of Harvard Medical School, has an online resource for those newly diagnosed with diabetes. It contains general facts, questions to ask your doctor, checklists, goals for blood sugar control and información en español. Guide ~ The Answer Place contains a wealth of information about epilepsy and seizures. There is a lot to explore, and for the newcomer it may be hard to figure out where to begin. The site was designed to meet the needs of those who have some knowledge of epilepsy and want to learn more by exploring on their own, and for those of you who may have just been diagnosed with the condition, or have learned that someone close to you has epilepsy. These QuickStart Guides will give you an introduction to the many facets of epilepsy, and point you to places where you can learn more throughout the Answer Place. Visit: Guides for additional information. ~ A newly launched website, tells the moving true story of a family coping with their mother’s affliction with Lewy body disease. Lewy body disease is the second most common form of dementia after Alzheimer’s, yet many healthcare workers, including those specializing in geriatrics and most of the general public, are unaware of this pernicious disease. Lewy body disease destroys the victim’s mind while simultaneously causing physical debilitation in a manner similar to Parkinson’s disease. There is no cure. Lewy Body Journal also offers:
Quotes The power of intention is a critical factor in all areas of life. Simply by intending to create synchronicity in your life, you can nurture that result. Deepak Chopra When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, 'I used everything you gave me' Erma Bombeck One life is all we have and we live it as we believe in living it. And then it is gone. But to sacrifice what you are and live without belief, that's more terrible than dying. Joan of Arc A habit cannot be tossed out the window; it must be coaxed down the stairs a step at a time. Mark Twain Botanists say that trees need the powerful March winds to flex their trunks and main branches, so the sap is drawn up to nourish the budding leaves. Perhaps we need the gales of life in the same way, though we dislike enduring them. Jane Truax One must never lose time in vainly regretting the past or in complaining against the changes which cause us discomfort, for change is the essence of life. Anatole France What a man thinks of himself, that is what determines, or rather indicates, his fate. Henry David Thoreau Your living is determined not so much by what life brings to you as by the attitude you bring to life; not so much by what happens to you as by the way your mind looks at what happens. John Homer Miller For The Garden Of Your Daily Living Plant 4. Lettuce really love one another Water Freely With Patience Author Unknown
From: ERIC Clearinghouse on Disabilities& Gifted Education Hello: My mother, who is 77, is currently in a rehab facility, but the nursing/therapy team recommends she move to a permanent long-term care facility. ~ Murphy's Laws On Work Everything can be filed under 'miscellaneous.' ~ THAT'S IT FOR THIS ISSUE Subscribe: empoweringcaregivers-subscribe@yahoogroups.com REGARDING THE FORWARDING OF THE NEWSLETTER: Please do not forward this letter or subscribe anyone if they have not given you permission. We would like you to share it with others, but we do not want those who are not open to receiving it to be subjected to your forwarding it without their express permission. Thank you. DISCLAIMER: The Empowering Caregivers Site and the Empowering Caregivers newsletter contain views, opinions, statements, and recommendations of third party individuals, writers, advertisers and organizations. Empowering Caregivers/www.care-givers.com does not represent or endorse the views, accuracy or reliability of any advice, opinion, statement, product or service displayed or distributed on this web site. You acknowledge that any reliance upon such opinion, advice, statement or information shall be at your sole risk. The information provided by Empowering Caregivers / www.care-givers.com is for educational purposes only and should not be treated as medical advice. Nothing contained on Empowering Caregivers/www.care-givers.com is intended to be for medical diagnosis or treatment or a substitute for consultation with a qualified healthcare professional. In no event will Empowering Caregivers / www.care-givers.com, its affiliates, partners, agents, or contractors be liable to you for any damages or losses resulting from or caused by Empowering Caregivers / www.care-givers.com and its services, including use of the community message boards and chat rooms, free email, free web pages, content (including articles, stories, news) or any errors or omissions in ts content, even if advised of the possibility of such damages.
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