The Caregiver's Beacon Newsletter

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The Caregiver’s Beacon (tm)
“Tell me why – Show me how – Hold my hand”
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September 15, 2001                                                                                 Vol. 4 No. 17
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ALZwell Caregiver Support and ElderCare Online

http://www.alzwell.com and http://www.ec-online.net
Serving the Needs of Caregivers Since 1996
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Dear Friends,

Few of us knew what the day would bring when we awoke last Tuesday. For many of us, the alarm clock rang on a normal weekday. Maybe you stirred a bit early to prepare for the day. Was it going to be a hectic day of errands and chores? Was it going to be one of those peaceful ones with Mom at day care and the kids finally back to school? Or were you nervous about an upcoming doctor visit or increasingly bad symptoms from your loved one?

That Tuesday we were all rocked out of our normal routines, either by a phone call from a loved one, that chilling announcement from the newscaster, or from the wail of sirens too close to home. I stared in shocked disbelief at CNN, watching the first tower engulfed in flames, the World Trade Center that I had seen countless times from the commuter train window or from the roof of my childhood home.

When the second tower exploded before my eyes, I (and many of us) knew that something had drastically changed. They tragedy and loss were at the top of our minds, but we dared not mention it. Then the two towers jolted and crumbled on top of the rescue workers. What we had assumed was the normal state of affairs for our lives was turned upside down. We are thinking and feeling animals: how do we find meaning in an event that otherwise defies explanation. Does this cause us to question our Faith? Do we challenge our country’s foreign policy? Do we seek revenge?

I won’t overemphasize the parallels between this tragedy and the life changes that many face as caregivers: the shocked realization that your world has changed dramatically; the surge of painful or misunderstood emotions; the grasping for answers and guidance; the slow coping and conquering of the task at hand; and the final insight that you have grown and learned and loved. All challenges pose us with opportunities and choices to tackle the problem at hand, or to sink into denial or anger or worse. Now, not everyone of us can be a conquering heroine, but we can be healers.

While channel surfing on Friday, I caught a snippet of a speech (I believe it was President Bush). I will paraphrase what I recall hearing: “It is in adversity that we find our true selves, whether as individuals or as a nation.” From this horrific I pray that we as a nation show ourselves to be noble and united, not angry or vindictive. And in our caregiving challenges that we grow individually while honoring our loved ones.

Kind Regards,
Rich O’Boyle, Publisher
ALZwell Caregiver Support
ElderCare Online
Prism Caregiver Education Series

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INSIDE THIS ISSUE

The Forum: Let’s Talk About Chat
Caregiver Voices: FunFest Fotos, Letter to the Editor, Poetry
Book Review: A Short Guide to a Happy Life
Our Sponsor: Prism Care Card
Top Alzheimer’s/Caregiving Sites: “Faith Walks On” by Debi Gentry
Feature Article: “Too Good to Be True?: Preventing Frauds and Scams” by Rich O’Boyle
Mood Music for Caregivers: Free Downloadable Songs Now Available
Chat Schedule: Updates for September
Subscription Information

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THE FORUM: Let’s Talk About Chat

The Internet is a unique communication tool. It allows not only speedy e-mail, but also “asynchronous” and real-time text interaction in message boards and chatrooms, respectively. At ElderCare Online and ALZwell Caregiver Support, we strive to be a resource for these types of supportive interaction. Our message board is one of the busiest available due to its ease of use, expert moderators, and wealth of information. But I must admit that our chatroom has been less-than-stellar – up until now.

After several tedious hours, I have added a new chatroom to our websites. That old clunky thing with the irrelevant banner ads and temperamental connection is GONE! I have added a state of the art chatroom that I am gradually customizing and modifying to fit our needs. Regrettably, it is still a java-based tool, so WebTV users will be unable to access it. But overall, it is faster, easier to access, and includes a larger and cleaner interface. It cost a few bucks, but it is worth it for a better chatting experience.

Now we need some input from you: Please answer our quick 5 question survey on “Chat Preferences” so that we can improve our online offerings. Many of you have expressed interest in joining a chat session, but were put off by the old chatroom. We are open to changing scheduled times and dates to fit with the broader needs of our members. We just need your input to make sure that everything is the best that it can be.

Please respond to our survey at http://www.zoomerang.com/survey.zgi?5BQTRNNMPPW9S92RJPR5VDCW. If you have trouble using that link, you may access the survey from the website front page under “What’s New.” Your input is essential to making this succeed.

Our current chat schedule is posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm as well as at the end of this newsletter.

I want to clarify a little misprint that appeared in the last issue of the newsletter. In the course of copying and pasting the text of the newsletter into the mailing list software, some of the text was mysteriously translated. Normally that means you get some strange typeface or Greek letters mixed in. But in this case, it turned a smiley face into the letter “J.” As luck would have it, the “J” was inserted into my note about flirting, and you can imagine all of the curious messages that popped up from that! No, I was not singling out any of our members in particular for being flirtatious. It was one of those computer gremlins stirring up a little trouble. My apologies for the blushing cheeks (and the too-fast beating hearts).

CAREGIVER VOICES: FunFest Fotos, Letter to the Editor, Poetry

Back in July, Edyth Ann Knox and Doug Keck kicked off the first annual CareGivers FunFest in Burlington, Iowa as a way to promote dementia awareness and to raise funds for caregiver respite. In coming years I expect this type of sincere grass roots activism to blossom around the country. We need more attention to caregiver needs as well as medical research.

Carol White has organized some pictures of the funfest in her site. We had a lot of fun and a few chuckles. If you know of a caregiver or anyone that would like to see these pictures, please pass this URL along to them. http://www.angelfire.com/ak2/carolwhite/Funfest.html.

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I would like to reprint a “Letter to the Editor” from Dale Anglund, Executive Director of Long-Term Home Care of the Frail Elderly Foundation in New York.

Dear Rich,

The assumption that Labor Day is a away for society to celebrate the distribution of income and that market or paying work is the only appropriate form of human toil, remains one of the obstacles to the real labor of nurturing unpaid caregivers. How many caregivers today are feeling left out of the Labor Day celebration? How much more lonely do caregivers feel today, because their chosen field is not included in the labor pool? With small observations like this, on a day like today, we can rethink and reunite society to begin acknowledging the billions of dollars worth of unpaid care.

Mr. Dale Anglund
Long Term Home Care of The Frail Elderly Foundation
174 7th Avenue
New York, NY 10011
212 627-4886
dalee@servsite.com

Letters to the Editor should be e-mailed to rich@ec-online.net

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Dorothy Womack has provided us with a new poem in the aftermath of the terrorist activities this past week.

ONE NATION

The skies exploded suddenly
Led by minions far away
A mask of terrorism showed intent
To destroy the U.S.A.....

 
Countless thousands lost their lives
Simply going about that day --
When securities of every kind
Were summarily taken away ---

We, as one nation, raised our eyes
To the Heavens up above
We prayed and mourned our losses
Never doubting in God's Love

Nor, in our power, as a land
To recover from tragedies ---
Standing strong - United in one accord
Renouncing our enemies ---

Our birthright and our birthplace
Home of the brave and the free
With each step, more determined
To ever, faithful be ---

One nation - Indivisible
Trusting in one Almighty God
Longing and remaining --
One nation ----
Forever, free..........

2001 Dorothy Womack

Additional poems and access to Dorothy’s websites can be found in the Caregiver Support Network at http://www.ec-online.net/Community/Activists/can.htm. If you are a poet or write inspirational articles, please contact us about becoming a regular contributor at rich@ec-online.net

BOOK REVIEWS: A Short Guide to a Happy Life by Anna Quindlen

The author, Anna Quindlen, a columnist and best selling author, begins this petite, but far from diminutive story, by acknowledging her lack of credentials to offer advice in any particular field. As a novelist, she goes on to tell us that her work is "human nature," and that "real life" is all she really knows. And this is what her story is about, real life. The story – her own, of what she learned about life -- is simple, and the prose is beautifully written and embellished with photographs. This simply beautiful story is about recognizing and embracing one's own life.

You can read the complete review at http://www.ec-online.net/Knowledge/BookReviews/quindlenhappy.htm. You may purchase the book on Amazon.com or browse through other caregiving books, reviews and excerpts in the ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm.

OUR SPONSOR: Prism Care Card

The response to our newest caregiving product has been exceptional. I want to clarify some additional benefits that were not included in the first announcement. Each Care Card membership includes a $15 discount card for any items bought at Kmart, as well as a free copy of our Learning Resource Guide “Managing Medicines Safely” (a $6.95 value). These additional benefits are available with whichever card you purchase, from the basic package on up to the complete senior/medical card.

In partnership with Advantage Benefits and Amerikind, we are making available a custom version of their popular discount program with caregivers and seniors in mind. We have created the “Prism Care Card” that provides substantial discounts on pharmacy, vision care, hearing aids, and other healthcare services. Our Prism PLUS Senior Care Card offers discounted access to long-term care services such as respite and adult day care. These are products and services that Medicare does not pay for (and probably won’t pay for anytime soon).

We wouldn’t need this kind of discount program if Medicare paid for hearing aids, drugs, respite and other necessary eldercare services. Don’t wait for Congress to get off of it’s duff and pass the required legislation. For very modest monthly fees of as low as $9.95, you can get the prescription drug discounts and more. If you pay more than $75 per month on prescription drugs, then the low monthly fee may more than make up for the savings that you will receive.

When talking with Advantage, I was struck by their efforts to NOT overstate the potential savings and to give reasonable expectations on the types of savings that caregivers would actually realize. My first interest was the very real savings that caregivers could get just when using the card for discounts on prescription drugs. I asked Advantage to run a series of scenarios for drugs commonly bought by our membership. The savings averaged about 13% on drugs such as Aricept, Reminyl, Haldol, Ambien, Prozac, and Wellbutrin. And these savings extend to all family members, not just the person paying for the card.

Now you may see other programs that promise “Savings of 60%” or more. That’s hype, pure and simple. I have researched specific drugs and even 13% is a decent savings. I have prepared a worksheet that you can use to conduct your own research on drugs costs. Just contact local pharmacies and then call Advantage and you will be able to see the savings for yourself. I even researched pharmacies in my neighborhood, and the closest ones to my house participated in the program.

The cost-saving program extends beyond just prescription drugs. We also work with Advantage to provide access to eldercare services such as free telephone access to a Service Director who can answer questions that you may have about eldercare assistance and long term care issues. Referrals may be given to agencies in your local area who can provide even more comprehensive assistance. Members are eligible to participate in the Long Term Care Network that offers discounted services through a wide variety of long term care providers such as nursing homes, home care agencies, hospice, durable medical equipment and homemaker services.

I invite you to review the Prism Care Card in our secure online store. We have detailed information on the specific benefits available with each program. You can also download the Cost Comparison Worksheet as well. We will be providing free of charge a copy of our Learning Resource Guide “Managing Medicines Safely” to all new Prism Care Card members ($6.95 value) along with a $15 cash discount card for purchases at any Kmart store. Please visit our online store at http://www.store.yahoo.com/eldercareonline. If you have specific questions or prefer not to shop online, you may contact our partner Advantage Benefits directly at (800) 544-9505. Just make sure that you are calling about the Prism Care Card from ElderCare Online to ensure that you get the special caregiver discount program.

TOP ALZHEIMERS/CAREGIVING SITES: “Faith Walks On” by Debi Gentry

Debi Gentry’s “Faith Walks On” website is an inspiration to many caregivers, whether devout Christian or not. Her experience as caregiver to both of her parents with Alzheimer’s Disease has given her a perspective that so many of us can relate to.

As she says, “Caregiving is a different world,” and one experiences many emotions in the course of one’s caregiving journey. Debi has shared some poems and thoughts and even Bible verses that has helped her during some hard and stressful times. She also shares some of articles that she wrote in very humbling times, “praying that if they could help just one person, it would be worth all the tears shed as each article was written.” I was particularly impacted by the poem “An Alzheimer’s Patients Point of View” and the warm music that plays from each page.

You can visit Debi’s Page at http://www.geocities.com/ibelieve1959/index.html

Brenda Parris Sibley has established one of the best clearinghouses for Alzheimer's Disease and caregiving sites on the Internet. She has contacted and worked with a variety of websites to collect them into a directory with rankings showing which are the most popular. Brenda and the other webmasters and webmistresses have done an excellent job of creating unique and compelling sites that speak directly to family caregivers. In each issue of this newsletter, we will mention one of the many sites that comprise the Top AD/Caregiving Sites List.

You can browse through other sites and vote for ElderCare Online by clicking on the "Top AD/Caregiving Sites" icon on the front page of ElderCare Online at http://www.ec-online.net (or following this complicated link: http://new.topsitelists.com/topsites.cgi?ID=1&user=bpsibley&area=bests.) You are welcome to use ElderCare Online as your portal to access these sites, since I know that you will want to visit again and again. I suggest that you access the list often as new sites are added regularly, and as you explore the list, you are bound to find one that didn't catch your attention last time.

FEATURE ARTICLE: “Too Good to Be True?: Preventing Frauds and Scams” by Rich O’Boyle

Anti-aging and alternative health products are extremely popular among people, especially senior citizens. One in ten seniors uses some type of dietary supplement on a daily basis, such as ginkgo biloba, St. John’s wort, glucosamine, melatonin, and other herbal and botanical preparations. Some of these supplements may indeed have beneficial medical uses, but may also increase risks for adverse reactions.

You can read the complete article with tips on spotting fraudulent claims and online resources at http://www.ec-online.net/Knowledge/Articles/toogood.html.

MOOD MUSIC FOR CAREGIVERS: Free Downloadable Songs Now Available

If you are anything like me, you love to listen to music. It doesn’t really matter what it is (except Rap and some Pop), I like it all. I frequently listen to Internet radio when I am working and find that it keeps me “whistling while I surf.” Sometimes I just listen to background music and other times I find and download particular songs that I like.

The days of free music via Napster are over. No longer are you able to indiscriminately download copyrighted songs – and that’s a good thing. But some websites are working to provide free clips or even full songs. Often you can download and listen to songs from websites maintained by the musical artists themselves. In the near future, you will be able to subscribe to online music services that may (or may not) give access to huge libraries of songs.

But if you look around hard enough, you can find pockets of free music. Amazon.com (our bookstore partner for 4 years) now offers free songs on its website as an enticement to purchase the full CD. This is completely legal and respects the copyrights of the artists. I have begun to compile a collection of free songs that you can download and play directly from our ElderCare Bookstore. I also hope that if you enjoy the songs you will purchase the CD. ElderCare Online receives a small commission for each CD or book that you purchase.

I hope that you find this little service to be helpful. I believe that it will make your surfing experience more enjoyable and give you more use out of your computer. The only downside is that downloads may take a while since they tend to be large files. Regardless, it is a great way to enjoy the web with sound.

To access “Mood Music for Caregivers,” visit the ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm. We will be adding and collecting new songs every few weeks, so visit often.

CHAT SCHEDULE: Updates for September

Enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm. All times are U.S. Eastern Standard Time (GMT –5). Topics are suggested and NOT required. We always focus on the issues and that our members want to discuss. Please remember that we have a new chatroom. If you had trouble using it in the last, please give it another try!

September 19 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

September 19 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

September 20 (Thursday 7:00 to 9:00PM EST) “Healing Loss:” Host Julie Siri leads a discussion group for people who have lost a loved one to premature death, Alzheimer’s Disease, or other illness.

September 26 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

September 26 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

September 27 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

Enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm.

SUBSCRIPTION INFORMATION

The Caregiver’s Beacon is published bimonthly by ElderCare Online and ALZwell Caregiver Support. To subscribe to this free newsletter, visit the subscription information page at http://www.ec-online.net/Knowledge/Newsletters/subscribe.htm.

You may also go to the main page of the website at http://www.ec-online.net or http://www.alzwell.com and add your e-mail address to the white box and click on the "Subscribe" button (just one click!).

To unsubscribe from this list, simply (1) reply to this email message with the word "UNSUBSCRIBE" in the Subject: line, and (2) include your e-mail address in the body of the message. Many e-mail programs do not put your complete name@ISP.com in the To: line, so it is impossible to track down your address.

(c) 2001 Prism Innovations, Inc. All Rights Reserved.

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