UPDATES AT THE SITE
INFORMATIVE CAREGIVING ARTICLES & INSPIRATION
MESSAGE BOARDS & EMAIL BAG
JOKES & HUMOR
Better late than never! Somehow, between my travels and coming up from paper work, the newsletter is complete... it's a long one filled with a lot of important information... so I am going to let you delve right into it... take care....
May your journey be gentle and beautiful!
Our newly designed caregiving articles database is almost completed. We are still updating the appropriate categories and descriptions for many of the articles but the bulk of the articles are up and you may begin viewing them at: Caregiving Articles. Please bookmark this new link in your resources as the old link will become obsolete with a link forwarding on it.
We are extremely grateful to Ms. Paula Hoare who gave so much time and energy in designing the database. It is definitely much easier to use, more user friendly and it saves is a tremendous amount of time in labor preparing them for the website. Thank you with all my heart Paula.
Free Email Accounts At Empowering Caregivers
Sign up for your primary or secondary email account and tell a friend about your free email account at the Empowering Caregivers Site. You can sign up from the main page or click on this link: Free email account
National Organization For Empowering Caregivers NOFEC.org
Invitation To Join NOFEC
National Organization For Empowering Caregiver's (NOFEC) invites you to sign up as members. If you are a family caregiver membership is complimentary. We invite you to fill in our caregiver survey.. The surveys are strictly confidential. The statistics will be used in our proposals as we apply for grants and funding. To reach the site click on this link: www.nofec.org. or click on Join to sign up.
At NOFEC's site, we have just completed the design and installation of our resource database so you may submit links to organizations, non profits, government links, and educational links. Click on: Submit (Please do not submit commercial links as they will be declined.)
Mark Kalamar is the creator of both of these databases for NOFEC. His caring and support has just been wonderful and again, we are extremely grateful for his time and energy.
It is a miracle to see how NOFEC has been thriving as a grass roots organization with so many professional volunteers giving of their time. We are truly fortunate and so very grateful.
While many of you are saddled with caring 24/7 several of you have been reaching out to do something that supports you in a totally different way. Volunteering can bring purpose and meaning into your lives while you are at home. It is a way to connect with others and serve on a different level.
We have received many emails from members offering to volunteer.You can volunteer directly at NOFEC or email us at: email@example.com. We also have a volunteer form at the site which you may fill in and submit from online.Please tell us a little about yourself : such as what your strengths and interests are; or what your gifts are and how you envision yourself assisting us. Many positions available and they can be performed from your home on your computer. Presently, we are in need of data entry and editors. We also have listings at NOFEC and on several volunteer sites such as Idealist.org, Volunteermatch.org, SeniorService.org and servenet.org. Just search for National Organization For Empowering Caregivers NOFEC and you will find the lists of different volunteer positions we are seeking help with.
Empowering Caregivers Chats Resume onSept 15th
So many of you have checked in at various times while we were not meeting during the summer. I look forward to your participation as we resume our chats once again. Check our schedule at: Schedule
Learning From Life : Charlie Badenhop, Arati Co.Ltd
Sometimes He Sings : Joan Smith
Conscious Choices For Aging With Grace: Gail Mitchell
Coping Through Exercise: Daniel Kuhn MSW, Mather Institute on Aging
Good Grief!! Daniel Kuhn MSW, Mather Institute on Aging
Succeeding At Caring For A Loved One: Jacqueline Marcell
It's Hot Outside: Mary C. Fridley RN, BC, Gero-Resources
Elderly At Most Risk For Hyperthermia & Heat Related Illnesses: NYS Office Of Aging
Keeping Cool in the Summer Heat: Guidelines for The Elderly : NYS Office Of Aging
Memories, Meanings And Lessons For Life: Eileen McDargh
I'll Never Forget What's His Name:Jillian Leslie, Everyday Warriors
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.
Kay B aka ADA KAY posted at our message boards this month sharing about the passing of her mother. Kay left work over 4 years ago to care for her aging mother 24/7 and began attending the chats and participating in the community. Yet her passing in April was so devastating to her.. see her post: I know she is still having a difficult time adjusting from her post. For those of you who know her, you may want to email her at KAY.
Caregivers and back injuries are no strangers. The pulling and tugging used to move a disabled loved one will take its toll. Statistically, a back injury can cost $10,000.00 before surgery or rehabilitation, and one-third of all employed persons will have a back-related injury in their lifetimes…and caregivers are no exception.
Copyrighted 2003 by Mary C. Fridley RN, C
Mary C. Fridley RN, C is our featured Question & Answer columnist at Empowering Caregivers as well as a contributing editor. She is a Registered Nurse board certified in gerontology with more than twenty years of experience in the geriatric health field. She is a writer of advice columns and articles for caregivers as well as a public speaker. Write to Mary at: firstname.lastname@example.org and visit her site at: Gero-Resources.com
Well Spouse Foundation Annual Conference
The Well Spouse Foundation, an association of spousal caregivers - will hold their 15th annual conference, "Strengthening Ties and Making Connections," from October 24 - 26, 2003. The conference will be held at The Newport Harbor Hotel & Marina in Newport, Rhode Island. The foundationi s also sponsoring a respite weekend for interested parties living on the east coast, to be held from September 12 - 14, 2003 in Newtown,
Family conference registration rates are available to additional family members accompanying fully registered family attendees staying at the Royal Pacific Resort. E-mail Maggie Edgar for details.
A new workshop around family caregiving, sponsored by Last Acts Partner the National Family Caregivers Association (NFCA), will be held September 25 and 26, 2003, in San Francisco. The workshop, titled, ‘Communicating Effectively with Healthcare Professionals,’ empowers family caregivers to advocate more persuasively on behalf of their loved ones with the healthcare professionals providing treatment. It helps family caregivers function as true members of the healthcare team, assuring better continuity of care and better access to the resources needed by the care recipient. All materials needed to conduct the caregiver workshops, as well as on-going technical support, will be provided by NFCA. To learn more about this event and apply for attendance online, go to: nfcacares.org
Congressman James Oberstar (D-MN) has introduced the "Living Well with Fatal Chronic Illness Act of 2003" (HR 2883). It would establish a $3,000 refundable long-term care tax credit for caregivers of spouses, dependents, and certain other low income individuals, who have long-term care needs. The the credit may go to individuals in need of care or to their family caregivers.
For more details on the bill, check this overview from Americans for Better Care of the Dying (ABCD), one of the nation's leading advocacy groups for improving quality of care at the end of life: ABCD-Caring.org
A new program on spiritual care at the end of life will be held Monday, September 22, 2003, in Phoenix, AZ. The program is called, ‘Spiritual Care of Life's End: A Program for Clergy and Spiritual Leaders,’ and features Dr. Ira Byock, author of the renowned book ‘Dying Well.’ The event is co-sponsored by Last Acts Partner Hospice of the Valley as well as the Arizona Ecumenical Council. For more information about this event and to register, visit: hospiceofthevalley.org
A study from the Pew Internet & American Life Project reports that some six million home caregivers are now online. According to the study, Internet Health Resources, caregivers as a group are far more active than the general online population: 55% searched for information on prescription or over-the counter drugs (versus 34% of general users) and 62% sought information on a specific medical treatment or procedure (compared to 47% of general users). Full report is available in PDF format at PewInternet.org
The American Federation for Aging Research and the Merck Institute of Aging & Health have developed a terrific new website for older people and their caregivers seeking health information. Called Health Compass, at healthcompass.org, it provides three easy-to-use curricula on 1) searching the Web for health information; 2) evaluating the health information you find; and 3) making informed healthcare decisions. This last section also includes suggestions on how to improve communications with your physician.
Researchers report in the New England Journal of Medicine that a drug called memantine that was tested among patients with moderate-to-severe Alzheimer's disease has shown success in slowing mental deterioration. The drug also appeared to have few side effects. The Food and Drug Administration is now evaluating the drug for use in the United States. Drugs that can slow the deterioration that accompanies this disease will not only help patients but can substantially ease the burdens of care givers as well.To read more
Many people fear the loss of mental functioning, such as severe loss of memory, more than they fear death. But there is good news in a New York Times report of a recent Mayo Clinic study. The study examined mental functioning among people 90 to 99 years old. Researchers found that over half of the people in the study had good mental functioning, and about 12%, although they had significant memory problems, were still able to live independently and manage daily activities on their own. The researchers also noted the increased efforts to find drugs to slow mental impairment (see prior article in this E-News). Dr. John C. Morris, a neurologist at Washington University in St. Louis is quoted as saying that "M.C.I. (mild cognitive impairment) should not be accepted as a normal part of aging. It should be seen as a warning signal indicating that it's time to go get evaluated." To read more for to NY Times
Managing medications can be an enormous challenge for many older people. As we age we may be taking an increasing number of medications and supplements -- prescribed, over the counter and even herbal remedies -- to manage various diseases and symptoms. This mix of more drugs can have unintended consequences and requires careful attention and management.
Bush administration officials announced on Aug. 11 that they expect to cut Medicare payments to doctors by 4.2% at the beginning of 2004, unless Congress passes legislation that would reduce or eliminate the cut, the New York Times reports. In a proposed rule that will be published Aug. 15, administration officials say that the cut is required by law. The administration rule also would give doctors a "slightly higher" allowance for malpractice insurance costs because of "sharp increases" in providers' medical malpractice premiums, the Times reports. More info at : Kaisernetwork.org
Here’s some optimistic news for seniors and their caregivers.
I’m pasting below a release about some 800 medicines now in development for various diseases possibly associated with aging. For more information on new medicines being tested, you can go to a free website at phrma.org.
And don’t forget indigent seniors may well qualify for free drugs from manufacturer patient assistance programs. You can go to another free website, helpingpatients.org, for this information. Jeff Trewhitt (202) 835-3464
A new survey by the Pharmaceutical Research and Manufacturers of America (PhRMA) found that drug companies are testing more than 800 potential medicines for diseases of aging, including 123 for heart disease and stroke, 395 for cancer and 309 for such debilitating diseases as Alzheimer’s, diabetes, and osteoporosis. All of the medicines are either in human clinical trials or awaiting approval by the Food and Drug Administration. To read more go to: HOPE
This is the Spanish language version of the popular Last Acts Family Committee product (described fully below). Like its English counterpart, the Spanish Compendium contains information about caregiver resources from numerous organizations, including books, videos, Web sites and brochures. Each entry includes the resource title, producing organization, and information about how to order that particular item. To order a copy of the Spanish compendium, please send an email to email@example.com. Include your mailing information in the body of the email and "Spanish Compendium" in the subject line. To view a PDF version of this document, click here.
Discussion about end-of-life wishes are among the most difficult conversations to have, especially when everyone is healthy and death seems so far off. But an unexpected illness or injury can send a family into a tailspin, so it is important to talk about end-of-life wishes before an emergency situation forces you to do so. The Last Acts Family Committee has developed a new resource guide, Conversations before the Crisis. This booklet offers the reader conversation "triggers," such as using television programs and family gatherings to start talking, and includes sample language as guidance. This booklet is intended for use by both the elderly and children of the aging, and it includes a resources listing with helpful books and Web sites. To view this document online (in PDF format), click here.
This guide contains information from numerous organizations offering a variety of caregiver resources including books, videos, web sites and brochures. Each entry includes the resource title, producing organization, and information about how to order that particular item. To view the updated Last Acts Family Committee Consumer/Family Resources for End-of-Life Care, click here.
Adult Child-Caregiver Project at NYU ADRC
In the end of September, New York University School of Medicines's Silberstein Institute for Aging and Dementia will be initiating a two year program for family caregivers to participate in and individual participation requires a small time commitment. Participants will be provided with education and support to decrease negative caregiving effects for example: depression, increase positive caregiving effects such as: improving the quality of the caregiver/parent interaction, and developing a more favorable balance among life’s competing responsibilities. Sessions will occur during lunch or evenings at NYU with a light meal. There is no cost for participation.
Contact: Olanta Barton at: 550 First Avenue, THN 314, New York, NY 10016, Phone: (212) 263-5710; voicemail (212) 263-2619 Fax: (212) 263-6991 or email Olanta. N. Barton
The U.S. Administration on Aging (AoA) has joined forces with the National Caucus and Center on Black Aged (NCBA) and the National Council on Patient Information and Education (NCPIE) to celebrate "Take Your Loved One to the Doctor" day, September 16, 2003. The event is part of a U.S. Department of Health and Human Services campaign, "Closing the Health Gap 2003." Event information:
Research On Web Based Learning For Chronic Illness~
People with heart disease, lung disease or type II diabetes are invited to take part in a six-week online workshop sponsored by the Stanford School of Medicine. The interactive workshops are offered free of charge as part of a study of the effectiveness of Web-based learning in helping people acquire the skills needed to manage their chronic health conditions. Enrollment is nearing the maximum, so interested individuals are encouraged to sign up without delay. For more information or to register, visit healthyliving.stanford.edu.
A free 16-page booklet, “Palliative Care: Complete Care Everyone Deserves,” is available from the National Alliance for Caregiving (NAC) and New York City-based Friends and Relatives of Institutionalized Aged (FRIA). To request a copy, send an e-mail to firstname.lastname@example.org or go to http://www.caregiving.org/care.pdf.
Most senior citizens can see a family physician for the majority of their medical problems, but as they get older and sicker, their complex medical conditions often require the specialty of a geriatrician. That is, if they are able to find one. Currently, there are about 9,000 geriatricians in the United States, but the number is declining. The geriatrics society estimates 36,000 will be needed by 2030. Geriatricians specialize in medical problems associated with aging. They have several years of additional training in areas such as neurology, psychiatry and urology so they can recognize problems other doctors may consider normal aging. globalaging.org
The Senate Special Committee on Aging held a hearing on 7/28 focusing on senior depression and life-saving mental health treatments for older Americans. The hearing addressed the issue that, among the elderly, depression can be mistaken for physical illness because the symptoms are thought to be age-related. Data addressed as part of the hearing suggest that while older Americans constitute 13 percent of the national population, they commit 18 percent of the suicides. Panelists also addressed the issue that men are four times as likely to commit suicide as women. The hearing reviewed studies that assert 70 percent of elderly suicide victims met with their doctors within one month of their suicide and were not treated or referred to treatment for depression. Additional information on the hearing is available on the SpecialCommittee on Aging’s Web site..
If you just start dancing, I can assure you, by the powers vested in me (more than you could ever imagine), the music will be added - as will the partners, the giant disco ball, and whatever else you like).
The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.
Friends are the ones who know the song in your heart and can sing it back to you when you have forgotten the words."
Life Is What Happens While You’re Making Other Plans
The most destructive habit..............................Worry
On your web site you state that there should be more legislation to help grandparents that are taking care of their grandchildren. There is already everything available from foster care payments to food stamps to SSI. How much help do you think they need?
I haven't introduced myself as it seems that putting everything down in words will be too hard to do. My name is Dawn and I am 22 years old. I am currently taking care of my dad (in my home) who is dying from Hep. C
My life has not been the same since December when my first child died during pregnancy. ( I only mention this because I was not "ready" to face another huge life challange. Then my dad got really ill in May. I took care of him for 5 weeks in his home, then he went into a nursing home during the summer, and now he is in my home. I feel like I have lost my identity in all of this. I used to be a student, an intern, have a job, and be a mom. Now I am a little bit of everything but nothing at all. Does that make sense? I dread the question "what do you do?"
True Author Unknown
These are one of those emails that goes round and round on the Internet. I searched for an author but was unsuccessful.. it appeared on thousands of sites... so my apologies go out to the original author and hope it brought you a smile.
"Down in Florida Waters..."
While sports fishing off the Florida coast, a tourist capsized his boat. He could swim, but his fear of alligators kept him clinging to the overturned craft.
Spotting an old beachcomber standing on the shore, the tourist shouted, " Are there any gators around here?!"
September 1, 2003
Publisher & Editor: GAIL R. MITCHELL-
THAT'S IT FOR THIS ISSUE
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