February came and went in the blink of my eye. It's amazing how fast times passes as we get older. I often wonder if it is because we are more aware of it? Or is it because we never seem to find enough hours in the day to do all that we planned?

The past month has been very busy for NOFEC's expansion. We have been blessed with several professional volunteers who are gracing both the Empowering Caregivers Site and NOFEC with customized databases for articles, resources, submissions etc, making both even more user-friendly. We also have been developing a wonderful staff including an outreach coordinator, director of marketing, a consultant, and help here in the office. There is an incredible amount of background work being generated including training development for volunteers. Coupled with proposals that have been submitted for funding, I can say this has been a fast paced but very exciting time of growth and development.

I have also been presenting workshops locally here in NYC to family caregivers and professional caregivers and staffs from non-profit agencies. It is helping us to get even a better pulse on the growing needs of caregivers not only locally but on a national level.

During the next two months, there will be no new articles posted in the caregiving areas or expert columns... there will be no spotlights and additional materials added to the site until our databases are up and functioning properly, which will save perhaps over an hour or so of formatting each article to the web. I don't want to bore you with the logistics and background, but building a web site, manually inputting each document is an extremely time consuming project. So our databases are a welcomed respite for me, in particular since I have been doing this all along.

Please be patient with us. I am off to Chicago for an exciting week at the American Society of Aging....

See you in April...

Richest Blessings to you on your journey.
We always welcome your contributions, feedback, support and suggestions. Have a wonderful week
.
In Love & Light,
Gail
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UPDATES AT THE SITE
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Caregiver Books Given Away Monthly

Butteryfly, Jeannie and Stevecarer have been chosen to receive Daily Comforts For Caregivers by Pat Samples. This beautiful book of daily meditations is comforting and relative to the many experiences caregivers go through. There's one for every day in the year.

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IVillage Chat Will Resume After April 15th, 2003

"Featured Guest Experts"

Featured- Columnist

Mary C. Fridley
Questions & Answers
March 2003
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Or click on this link:
Featured Guest Experts
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NEW CAREGIVING ARTICLES AT THE SITE
(New Caregiver articles will be posted in April)
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In Memory

In passing we remember Butterflie's mother inlaw who passed quietly in her sleep on February 28th and Rose aka Varosewood's father who passed on February 19th. Please take time to send loving thoughts out for gentle healings. Rose, in particular having cared for both of her parents is having a difficult time because to maintain her own sanity, she made a difficult decision to move out and take care of her own health which was in jeopardy. As a result her parents stopped speaking with her and this made his passing even more difficult.

I acknowledge this in Rose because many caregivers can relate to this type of situation. It is so very important to remember how loving and caring you are as is Rose, so there is no deep seated guilt, knowing she did the very best that she was capable of.

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CAREGIVERS CONCERNS

Stress Management: A Short Exercise

Just in case you've had a rough day, here's a stress management technique. Recommended in all the latest psychological texts. The funny thing is that it really works...

  • Picture yourself near a stream.
  • Birds are softly chirping in the cool mountain air.
  • No one but you knows your secret place.
  • You are in total seclusion from the hectic place called "the world."
  • The soothing sound of a gentle waterfall fills the air with a cascade of serenity.
  • The water is crystal clear.
  • You can easily make out the face of the person you're holding underwater.

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IMPORTANT NEWS

Lifespan Respite Task Force
ARCH National Respite Coalition
February 28, 2003

The latest word on the Lifespan Respite Care Act of 2003 is that it will be introduced in both the House and Senate on Wednesday, March 5, and marked up in the Senate Health, Education, Labor and Pensions Committee on March 12.

House Cosponsors
In the House (as of two days ago), the original cosponsors are Langevin, Greenwood, Abercrombie (HI), Ackerman (NY), Allen (ME), Brady (PA), Brown (FL), Brown (OH), Christensen (VI), DeLauro (CT), Doyle (PA), Engel (NY), Evans (IL), Foley (FL), Ford (TN), Frank (MA), Frost (TX), Green (TX), Gutierrez (IL), Hoeffel (PA), Johnson (CT), Kildee (MI), Lantos (CA), Matsui (CA), McDermott (WA), McHugh (NY), McNulty (NY), Millender-McDonald (CA), Miller (CA), Nadler (NY), Napolitano (CA), Norton (DC), Oberstar (MN), Olver (MA), Owens (NY), Pascrell (NJ), Payne (NJ), Serrano (NY), Simmons (CT), Skelton (MO), Waxman (CA), Woolsey (CA). New original cosponsors will include Brown-Waite (FL), Towns (NY), Stenholm (TX) and Kennedy (RI).

Senate Cosponsors
In the Senate, so far, original cosponsors are Clinton, Warner, Snowe, Mikulski, Jeffords, Kennedy, Murray, Collins, Smith, and Breaux.

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India Launches Family Caregiving Alliance

On February 19, Heritage Hospital in Hyderabad, India, launched Family Caregiving Alliance India, the first ever caregiving initiative in India. Starting in Hyderabad, the Indian alliance plans to expand to Delhi, Mumbai, and Madras over the next year and will include organizations across the age spectrum, including those for caregivers of children with disabilities and grandparents caring for grandkids. It was launched with the technical assistance and care of Gail Hunt of the National Alliance For Caregiving (US). The head of the new alliance is K R Gangadharan, head of Heritage Hospital. He can be reached at gangadar@hd1.vsnl.net.in.

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National Bone Marrow Transplant Link

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The First Annual Caring Advocate
Jose Dangcil Memorial Writing Contest

It is with great pleasure that we announce the launch of a new “winning” opportunity for deserving caregivers, in honor of the late Jose Dangcil: for the full story on this special honorarium, click on this link Jose Dangcil

Any caregiver, professional or unpaid, is eligible to enter the Writing Contest. Awards will be made to three (3) winners annually. Applicants are asked to submit (either via email or USPS) an essay, 500-words or less, about their personal care giving experience. The winning entries will be published in upcoming issues of The Caring Advocate newsletter, and each winning writer will receive five (5) copies of the issue in which their essay appears.

  • Third Place will receive a free one-year subscription (a $12 value)
  • Second Place- a free two-year subscription (a $24 value)
  • First Place Winner- a free three-year subscription to TCA (a $36 value).

For those of you who have submitted Spotlights to the Empowering Caregivers Site, you might want to consider entering it. The deadline for this year’s entries is April 15th, 2003. For more information, go to: TheCaringAdvocate.com

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Oncologists May Profit on Chemotherapy
At the Expense of Dying Patients

A recent New York Times article examines the high profits that oncologists can reap by providing chemotherapy in their offices. Normally patients fill prescriptions at pharmacies, but oncologists buy chemotherapy drugs directly from the manufacturers, often at deep discounts, and administer them intravenously in their offices. However, health insurance is charged the full cost without the discount. Insurers are now taking a hard look at such practices and studying ways to reduce their costs.

Particularly troubling for patients with advanced cancer is the conflict of interest this creates for the physician. Patients depend upon their doctors to help them decide whether to undergo or continue chemotherapy. The financial incentive behind this billing practice may result in doctors recommending chemotherapy to patients who cannot benefit from the treatment. The Times article notes that a 2001 study of cancer patients conducted by a team of researchers at the National Institutes of Health found that a third of those patients received chemotherapy in the last six months of their lives, even when their cancers were considered unresponsive to chemotherapy.

Physicians argue that these findings reflect patients who insist on additional treatment even when advised that it will not benefit them. However, inappropriate treatment may also delay or prevent timely referral for more appropriate hospice care. This billing practice raises serious concerns for both health care costs and the delivery of quality care. To read more go to: Chemo.

Planning Ahead:
A Free, Personal Manual For Estate Planning

The Northern California Cancer Center, http://www.nccc.org has published Estates: Planning Ahead (A personal manual for estate planning) which is offered free online or in hard copy. This is a welcome resource that just about every family may benefit from!

"The 50-page guide includes information about wills, trusts, guardianships, health care directives, funeral planning, memorial services, checklists, organ and tissue donations, and resources for additional assistance."

To request a free copy call 888-315-5988, by email at: education@nccc.org or see it online at: Manual

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Senators Push Measure To Protect Elderly
February 10, 2003

Two senators hope to combat abuse against the elderly with a bill that would better train workers to detect abused senior citizens and require FBI criminal background checks of nursing home aides.

The legislation being introduced Monday by Sens. John Breaux, D-La. and Orrin Hatch, R-Utah, comes after lawmakers have heard repeated reports of cases of abuse against senior citizens. Many of those cases were outlined in a series of congressional hearings

The bill uses the same approach used to combat child abuse and violence against women, he added.

The bill would create new programs to assist victims and establish grants to better educate and train law enforcement and prosecutors about elder abuse. It would also establish offices within the Departments of Justice and Health and Human Services to deal with elder abuse issues.

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Lifespan Respite Task Force
March 6, 2003

The Lifespan Respite Car Act of 2003 was introduced yesterday. Bill numbers are : HR 1083, S. 538. Senator Clinton's Congressional Record statement on the bill's introduction is attached. If you cannot download it here, see pages S3190-91 of the March 5, 2003, Congressional Record.

S. 538 is now on the schedule to be marked-up in the Senate Health, Education, Labor and Pensions Committee on March 19, 2003. I will keep you posted if this date changes again.

New side-by-side summaries of the bill, the latest list of endorsing organizations, and other relevant information will be posted shortly at the Lifespan Respite Task Force.

Jill Kagan, Chair
National Respite Coalition
The Policy Division of the ARCH National Respite Network
4016 Oxford St.
Annandale, VA 22003
703-256-9578
jbkagan@aol.com

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DoYou Have An Aging Loved One With Memory Problems?
Try a new website . . . Get $50!

A new website has been developed to help people who are concerned about an aging loved one with memory problems. This educational program offers strategies for dealing with common problems, balancing home and work demands, coping with stress, and much more.

The National Institute on Aging is sponsoring a research study to determine how helpful the website is. Participation involves using the website and answering two on-line surveys. You will receive $50 for participating.

For more information, or to sign up, go to www.agingfamily.org . Or call the Aging Family Project toll-free at 1-800-934-0626.

To participate, you will need a PC computer with Internet Explorer 5.0 or better, and a fast connection to the Internet (DSL line, cable modem, etc.)

This research study is being conducted by the Oregon Center for Applied Science. Participation is voluntary and confidential. There are absolutely no sales or mailing lists involved.

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Cover The Uninsured Week Set
Takes Place March 10-16, 2003

Building on the momentum generated by the February 2002 launch of the Covering the Uninsured educational and advertising campaign and Web site,

The Robert Wood Johnson Foundation and many other influential organizations are co-sponsoring, ‘Cover the Uninsured Week.’ This unprecedented weeklong series of national and local activities will take place from Monday, March 10, through Sunday, March 16, 2003, in an effort to sensitize the public and opinion leaders to the plight of the more than 41 million Americans who lack health insurance. ‘Cover the Uninsured Week’ will launch today at a press conference in Washington, D.C. The organizers of this week have posted an online media kit (under the Media Information tab), an on campus resource guide (under On Campus tab) and the Interfaith Action Kit (under Interfaith tab). Each of these resources can be accessed using the link below.

To watch an archived web cast of the today’s press conference, go to: webcast

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Today’s Caregiver Magazine Presents Conference on Caregiving Featuring Leeza Gibbons

Today’s Caregiver Magazine is presenting a conference called, ‘Sharing Wisdom,’ on Friday, April 25, 2003, in Fort Lauderdale, FL. The event features television personality Leeza Gibbons as the keynote speaker. This one-day conference will offer expert advice, support and insight on such topics as getting help for caregivers, alternative medicine, managing stress and much more. CEU credits are available for clinical social work, marriage and family therapy, mental health counseling and nursing. Call Today’s Caregiver Magazine at (888) 829-2734 or visit the Web site below for more information. To learn more about this event and Today’s Caregiver Magazine, go to: www.caregiver.com

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HHS Approves Florida Independence Plus Waiver To Allow More People With Disabilities To Control Their Care

HHS Secretary Tommy G. Thompson today approved a Florida Medicaid waiver to expand the number of people with disabilities who can participate in decisions about care in their communities instead of institutions.

"Florida's waiver will allow more consumers and their families to play an active role in deciding how to plan, obtain and sustain community-based services," Secretary Thompson said. "We are committed to giving states greater flexibility in designing programs to help people with disabilities live fuller, more independent lives."

With this approval, Florida will expand its existing Medicaid consumer-directed care program using HHS' Independence Plus initiative, which is designed to make it easier for states to give beneficiaries with disabilities more control over their care and other services. Consumers and their families will be involved in planning all aspects of service delivery, including hiring, training and, if necessary, firing service providers

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INFORMATIVE CAREGIVING ARTICLES & INSPIRATION

Quotes

What kills a skunk is the publicity it gives itself

Abraham Lincoln

Swallow your pride occasionally, it's nonfattening!

Unknown

A man wrapped up in himself makes a very small bundle.

Benjamin Franklin

Too many people overvalue what they are not and undervalue what they are.

Malcolm S. Forbes

There is no try - there is only do or not do.

Yoda, From The Empire Strikes Back

All the adversity I've had in my life, all my troubles and obstacles, have strengthened me... You may not realize it when it happens, but a kick in the teeth may be the best thing in the world for you.

Walt Disney

MESSAGE BOARDS & EMAIL BAG

I am the "caregiver" of Gordon who was seriously injured in June 2002. I had just fallen in love with him a couple of months before. We both drove a school bus. He is a widower and has a teenage son. I am the Mother of 4 boys-33, 14, 12, and 8.

An angry man who picked him up and threw him down on his head injured Gordon. I was called during the night that he had an accident but was fine. At 5:30AM, I was called by the Neuro-surgeon who performed the brain surgery. When I got to see him (he was out of state )he was in a coma and hooked up to many machines. He recovered so well that he as only hospitalized 10 days and discharged to Outpatient rehab. He has, since, returned to work (actually by September) and is doing very well in a lot of aspects. But several things still seem to be wrong. He is aware of these. He is quite obsessive about certain things. He gets irritated easily and sleeps a lot. Sometimes things that he says are like a tape that goes on. He says the same thin often. The reason that I have become concerned now is because of an outburst from about 2 weeks ago. Things came out from a while ago that I thought he had gotten over.

I guess al his is tough when nobody listens. My friends just think that I am some sort o nut for putting up with all this. But I know these things are happening because of his injury.

Any input from others would be greatly appreciated. Yelobus1

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I am new to this website, but not to caregiving. I am the sole {24/7 365 a year) caregiver of my grandmother, Leslie who is 66. I came to my grandparents house 14 months ago to "help them out" for an agreed upon 3 month period. Well, it is now 14 months later and I am still here. My grandfather was recently put into a nursing home, I was unable to continue caring for him because of his Alzheimer's. Now it is just my grandmother (who has had 2 strokes and multiple falls) and I. She is no longer able to drive, she uses a walker, or many of the every day tasks required to live on her own.

I came to help out my family. I have just recently turned 24 and have left college to take care of my grandparents. No one else in the family is able to, so I being the oldest granddaughter, was asked to take that role. I love my grandparents and want to give them the chance to live in their own home as long as possible, but I am unable to go to school, work or have any set plans because of this job. I receive no help whatsoever from family and am now feeling burned out. Please tell me there is a silver lining! OldAt Heart

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JOKES & HUMOR

11 People on a Rope

Eleven people were hanging on a rope under a helicopter, ten men and one woman. The rope was not strong enough to carry them all, so they decided that one has to leave, because otherwise they are all going to fall.

They were not able to name that person, until the woman held a very touching speech. She said that she w ill voluntarily let go of the rope, because as a woman she is used to giving up everything for her husband and kids, or for men in general, and was used to always making sacrifices with little in return.

As soon as she finished her speech, all the men started clapping their hands

Defi Nitions

Adult: A person who has stopped growing at both ends and is now growing in the middle.
Beauty Parlor:
A place where women curl up and dye.
Cannibal: Someone who is fed up with people.
CHICKENS: The only animals you eat before they are born and after they are dead.
Committee A body that keeps minutes and wastes hours.
Dust:: Mud with the juice squeezed out.
Egotist: Someone who is usually me-deep in conversation.
Gossip: A person who will never tell a lie if the truth will do more damage.
Handkerchief: Cold Storage

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