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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May 15, 2002                                                                                 Vol. 5 No. 10
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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,

Caregiving challenges each of us to be a more caring and compassionate person in the face of dire human situations. Whether you are dealing with internal family problems, your loved one’s medical crisis or your own feeling of anger or grief, you still must manage the day-to-day personal chores and responsibilities. No one has an easy solution to how to balance the extremes – but the wisdom and insight of other caregivers provides a well that you can go to for refreshment and nourishment.

Where does one start after a diagnosis when all seems so dark and futile? How do some people do it year after year? All journeys have a starting place. That beginning often serves as a touchstone to help you along the way. Start with a foundation and return to that foundation when the road is dark or the burden too heavy. The foundation of caregiving and all human relationships is one of Love and Respect for yourself and your care recipient.

Loving and Respecting yourself means recognizing your limitations and asking for help BEFORE you need it. Loving and Respecting your care recipient means empowering him/her to care for themselves, making the most of their remaining abilities and easing medical problems. Love and Respect are the foundation of a healthy caregiving relationship. I hope that this simple insight combined with your own positive energy and spiritual strength can help you during difficult times.

This newsletter is fairly short – I have been focused on working with several writers to develop new articles for the site and they are gradually coming together. I have also been very active with some of our Partners in Excellence, especially CAPS, the Greater New York Chapter of the National Association of Professional Geriatric Care Managers, and UliveandLearn.com. If you have suggestions on articles that you can not find anywhere else, please submit those suggestions directly to me. I want to make sure that the knowledge throughout the website represents what you caregivers really need.

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

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INSIDE THIS ISSUE

Feature Article: Too Good to be True? Preventing Health Frauds and Scams
ElderCare Bookstore: Updates and Lower Prices
Top Alzheimers/Caregiving Websites: The Last Acts Campaign
SelfCare Connection: Teleclasses with Pauline Salvucci
ElderCare Forum: Latest Postings
Chat Schedule: Updates for May
Subscription Information

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FEATURE ARTICLE: Too Good to be True? Preventing Health Frauds and Scams

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.

Worse, billions of consumer dollars are wasted on unproven, fraudulently marketed, and sometimes useless health care products and treatments. In addition to wasting their money, consumers with serious medical problems may be wasting valuable time before they seek proper treatment. Some products may cause serious harm and endanger lives. The Food and Drug Administration and the Federal Trade Commission have identified products whose marketing and advertising is fraudulent or misleading, including products whose ingredients are substandard or useless.

Fortunately, there are ways to tell which health-related claims are likely to be legitimate. This article will help you spot false and unsubstantiated claims. It describes some typical areas where fraud flourishes and suggests how you can protect yourself.

Read the complete article, including several tips on how to spot false claims at http://www.ec-online.net/Knowledge/Articles/toogood.html

ELDERCARE BOOKSTORE: Updates and Lower Prices

Our newest feature is a list of the top selling books each month. We also have our own recommended reading list. Please visit our Eldercare Bookstore for recent updates and news from Amazon.com: http://www.ec-online.net/Connections/bookstore.htm.

Top Ten Books for April:

1. Waiting for the Morning: A Mother and Daughter’s Journey Through Alzheimer’s Disease by Brenda Parris Sibley

2. Moments to Remember: Topics and Ideas for Reminiscence Groups: A Sequel to Down Memory Lane by Beckie Karras

3. When Someone You Love Has a Mental Illness: A Handbook for Family, Friends, and Caregivers by Rebecca Woolis and Agnes Hatfield

4. Beat the Nursing Home Trap: A Consumer’s Guide to Assisted Living and Long-Term Care by Joseph L. Matthews

5. Nursing Homes: The Family’s Journey by Peter Silin

6. An Early Winter by Marion Dane Bauer

7. The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss in Later Life by Nancy Mace and Peter Rabins

8. The American Bar Association Legal Guide for Older Americans: The Law Every American Over Fifty Needs to Know by Charles Sabatino, et al.

9. Taking Time for Me: How Caregivers Can Effectively Deal With Stress by Katherine Karr

10. Are Your Parents Driving You Crazy? How to Resolve the Most Common Dilemmas With Aging Parents by Joseph Ilardo and Carole Rothman

You can click through to detailed reviews, excerpts, ratings from readers, and other features (including some of our own book reviews) in our Eldercare Bookstore at http://www.ec-online.net/Connections/bookstore.htm.

New Lower Prices: Amazon already has some of the lowest prices for books anywhere (and even lower if you consider the sales tax savings). Recently they lowered prices for even more of their books. For example, now all books that normally cost $15 or more are now 30% off (unless otherwise marked). Until recently, only books that cost $10 or less had the highest discount. Take a new look at our selected list of books for even greater savings…

Don’t Forget our Caregiver Education Series: Our own series of print booklets is available in our own secure online store. It’s been hard to keep up with the demand for these handy, practical guidebooks. We cover such topics as Coping With Alzheimer’s Disease, Managing Medicines Safely, Talking With Your Doctor, and Choosing a Nursing Home, among others. Our time-saving workbooks, The Prism Medical Planner and the Prism Personal Organizer, are also in high demand. Please visit our online store for more information. Buying our high-quality booklets is a great way to support this website while getting valuable information. Visit our secure store at http://www.ec-online.net/Store/store.htm.

TOP ALZHEIMERS/CAREGIVING WEBSITES: The Last Acts Campaign

Last Acts is a national campaign to improve end-of-life care by a coalition of professional and consumer organizations. We believe in palliative care, focused on managing pain and making life better for individuals and families facing death.  Last Acts envisions a world in which dying people and their loved ones receive excellent care and are honored and supported by their community. This site is for professionals and volunteers working to improve care of the dying.

The Last Acts Web site is a valuable resource for those working to improve care of the dying or those generally interested in end-of-life care issues.  As a resource center and electronic meeting place, the site offers opportunities for individuals to contribute to the Last Acts campaign by describing personal experiences, promoting related events and resources and offering individual perspectives on articles and publications.   The active participation of our web visitors creates a rich on-line resource for all.  To get the most from the Last Acts web site, we recommend that you register for the site.   Registration allows you to:

  • receive e-mail updates when news is published on the site in your selected areas of interest,
  • comment on stories and campaign initiatives, 
  • submit information on the work of your organization, and
  • share your organization's or community's events and educational resources.

By registering for the Last Acts web site you can help us gain a better understanding of who is using the Last Acts site and their interests.  This will help us develop a more effective on-line community for improving end-of-life care.  To register for the Last Acts Web site, simple click on “Register for Full Access” on the left hand navigation bar of the home page at: http://www.lastacts.org.  Additionally, to receive the free Last Acts E-Newsletter, produced weekly, send an e-mail to join-lastacts-news@lists.lyris.net from the e-mail address you would like to subscribe.   This E-Newsletter keeps the national end-of-life care community current with breaking news, coming events, new resources and many other pertinent items.

SELFCARE CONNECTION: Teleclasses with Pauline Salvucci

Few things can shake you up more than the challenges of being a family caregiver. How can you provide care for a loved one and take care of yourself at the same time? Many say it's not possible. Some say they don't need help. Others may feel like a failure if they ask for it -- or even guilty or selfish for wanting it.

”But nothing could be further from the truth,” says Pauline Salvucci, personal coach, speaker, author, founder and President of Self Care Connection (tm), an Internet coaching company. "Self-care is as necessary for caregivers as air is for breathing. If you think you can't practice self-care because you're a caregiver you sell yourself short. You have to pay attention to your life, it's the only one you've got!"

Pauline knows this personally as well as professionally. As a family caregiver for the second time, Pauline is a former licensed psychotherapist who spent 10 years in a medical family practice counseling caregivers. Now she coaches caregivers and offers teleclasses to help them help themselves and improve their quality of life. "Juggling your life is a symptom," Pauline  says, "not a solution. You can do more than survive and hope for the best."

SelfCare Connection’s teleclasses are a practical and productive way to firmly grasp the essentials of how to create positive change in your life. Our teleclass participants, clients and newsletter subscribers have told us what classes they wanted. We responded to their requests and have created a selection of 55 minute teleclasses to help them -- and you -- build on your strengths and move from intention to action. Join us and learn how to build on your strengths and create a better life for yourself!

Topics include:

  • Self Care Isn’t Selfish
  • How to Improve Communication With Your Care Recipient
  • How to Get the Most From Your Healthcare Treatment Plan
  • Stepping Stones to Energy and Well Being

Teleclasses are conducted over the telephone, much like conference calls. All you do is "show up" via your telephone at the time and date of the class. To learn more about Self Care Connection (tm) Teleclasses visit http://www.selfcareconnection.com/teleclasses.html. If you decide to register for a class, make sure that you mention that you were referred by ElderCare Online. We receive a small commission for all referrals.

Pauline Salvucci, M.A., is a personal and professional life coach, speaker, founder and President of Self Care Connection, LLC, an Internet coaching company. Pauline coaches family caregivers "sandwiched" between their families and their aging parents and those living with chronic illness. As a former therapist with more than 20 years experience, Pauline spent 10 years in a medical family practice as a licensed marriage and family therapist counseling caregivers, men and women living with chronic illness and healthcare professionals. She is the author of numerous articles on self-care and personal development, including the popular "Self-Care Now!" booklet series, and the online Self Care Connection monthly newsletter. You can visit her web site at http://www.SelfCareConnection.com

ELDERCARE FORUM: Latest Postings

If you would like to register, please follow this link: http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=agree. Please excuse any little error messages that you may receive. We are working to resolve a software glitch. I will manually send your registration information and password. Just fill out the information and wait. I will get it to you in less than a day (probably within 15 minutes).

(Note: Some of these links may not transfer correctly via e-mail. In that case, just go to the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi or read this newsletter off of the website).

We Laugh to Survive: Jokes posted by our members. Be careful, some of these are really dumb or really racy… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=21

Casual Corner: “Growing Things:” It’s the time of year where those of us with green thumbs revel in the warmer days and dark dirt. If you enjoy gardening, join in this discussion at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=20&t=000029

News & Research: “Caregivers Invited to Participate in Online Study:” Here is a chance to help a doctoral student complete her research while earning a few extra bucks. We approve very few research requests, but this one seems worthy of your attention. It focuses on caregiver well-being, which is one of our favorite topics. Read more at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=26&t=000062.

Daily Challenges: “The Medication Merry-Go-Round:” Over the past few months, I have noticed a fair amount of discussion around the topic of whether, and how much, to medicate our loved ones. Member Semper Fi has started a thread where I hope we can have a frank discussion of the pros, cons, and unknowns of this important topic at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=1&t=000228

Early Onset Alzheimer’s Disease: “Spousal Caregivers Meeting Room:” You don’t have to be coping with Early Onset Alzheimer’s Disease to appreciate the tight friendships and support that our members share here. The issues that spouses face are different from those of adult children, so we carved out a place just for them at  http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=29&t=000077 .

Individuals Affected by Dementia: “Newbie Blues and Lewy Body Disease:” We have frequent discussions of less common dementias, especially Lewy Body Disease. Here is a new thread with some excellent links and resources. If you are also a Lewy Body Disease caregiver, please join in at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=27&t=000029

New Caregiver’s Meeting Room: “Rapid Progression of Alzheimer’s:” If you are caring for a loved one with Alzheimer’s Disease, nothing can be as frightening as the occasional “cliffs” that your loved one falls down. For many months they may remain stable and seem to stay well, but from time to time they may progress rapidly. Join a caregiver discussion at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=40&t=000036

I, Caregiver: “CGs Health and Survival:” Forum Moderator Edyth Ann has shared some personal reflections on the importance of caring for oneself. Please take the time to read her comments at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=19&t=000055.

Former Caregivers Meeting Room: For those of us who have moved forward from our caregiving responsibilities, or see light at the end of the tunnel, we have a special section of discussion threads at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=38.

We have literally hundreds of other discussions going on in the Forum. Please come by to browse and read. We cover so many of the issues that all caregivers encounter. Just reading the stories and comments can help you learn. If you have specific questions or feel that you need the support of others just like you, please sign up and join us. Visit the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi.

CHAT SCHEDULE: Updates for May

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). We have begun to provide chats that are hosted by caregivers in Australia. Australian times are GMT +10. Hopefully this will not cause a great deal of confusion and instead give us more opportunities to connect with each other.

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 the old one, please give it another try! Please note the new sessions added on Monday evenings, Wednesday mornings, and Saturday afternoons.

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.

May 16 (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."

May 18 (Saturday 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.”

May 20 (Monday 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.”

May 22 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

May 22 (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.”

May 22 (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.”

May 23 (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.”

May 25 (Saturday 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.”

May 27 (Monday 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.”

May 28 (Tuesday 9:00 to 11:00PM EST) “Children of Aging Parents:” Host Brian Duke from CAPS and the Institute for Aging at the University of Pennsylvania leads a discussion for family caregivers seeking understanding and resources.

May 29 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

May 29 (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.”

May 29 (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.”

May 30 (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.”

June 1 (Saturday 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.”

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.

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