ElderCare Beacon Newsletter

ElderCare Beacon
August 15, 2000                                                                   Vol. 3, No. 15

ElderCare Online – The Internet Community of Elder Caregivers http://www.ec-online.net
"Tell me why – Show me how – Hold my hand" (sm)
Serving the Needs of Caregivers Since 1997

Dear Friends,

This summer has proved to be very busy for me and the writers at ElderCare Online. We have been very active – writing articles, enhancing the community message board and hosting our busy discussion groups. Traffic has expanded greatly to the site, with more and more caregivers logging on and finding the information and support they need.

With all of this popularity has come a need to upgrade the technical foundation of the site. You may have noticed that the site was down for about 1 days last week. We were working on the server and have completed most of the necessary upgrades. However, the ElderCare Forum message board is still being reconfigured. I expect (hope) it to be back online in about 3 days.

Meanwhile, the rest of the site is back to normal and we are again hosting our discussion groups every Wednesday and Thursday night. Remember, we will be giving out several free caregiving books to attendees of the chat sessions, so please come on by. We have had many first-time chatters over the last few weeks and I have seen most of them come back for more. The chat room is remarkably easy to navigate, so don’t let that stop your from finding like-minded caregivers.

September will also be a busy month. I hope to get the September 1 newsletter out a few days early since we will have many new articles and discussion groups (including a few expert guest session).

Kind Regards,
Rich O’Boyle
ElderCare Online


ElderCare Forum: Under Repair
Feature Article: Maintaining Selfhood and Dignity in the Patient With Alzheimer’s Disease
Book Review: Coping With Your Difficult Older Parent
Get Active: Alzheimer’s Stamp Petition
Top AD/Caregiving Sites: Vote for ElderCare Online
Live Discussion Groups: Schedule for August
Subscription Information



The ElderCare Forum is currently undergoing a renovation. With all of the traffic and excitement, we found it necessary to upgrade the underlying server. Unfortunately, this will make the discussion board unavailable for a few more days. Please be patient. I know I am trying to be!

FEATURE ARTICLE: Maintaining Selfhood and Dignity in Patients With Alzheimer’s Disease

There is a big concern among professionals and family caregivers that we are "labeling" people with Alzheimer’s Disease instead of seeing each one as a person. Dorothy Seman, RN at the Alzheimer’s Family Care Center in Chicago, says, "It is important to know what disease a person has, but more important to know the person the disease has." Seman also says, "People with dementia are much more than plaques and tangles." By speaking with people in the early stages of Alzheimer’s Disease, we get insights into their needs and how to support their independence and dignity.

Contributing Editor Nancy Bryce reports from the World Alzheimer’s Congress with an insightful article on this important topic. Nancy brings together advice from experts, caregivers and people with Alzheimer’s Disease.

You can read the entire article at: http://www.ec-online.net/Knowledge/Articles/selfhood.html.

BOOK REVIEW: Coping With Your Difficult Older Parent by Grace LeBow, et al.

As part of our monthly Hot Topic on Talking With Your Aging Parents, Staff Writer Phyllis Laudano has written a review of the popular and practical caregiving book, "Coping With Your Difficult Older Parent," by Grace LeBow, et al. This book is an excellent guide to help stressed out adult children to talk to their aging parents. It offers step-by-step suggestions, case studies and examples that most of us will find useful. If you parent has difficult habits, a controlling personality or resists needed care, then you will find this book both informative and useful.

You can read the entire review at http://www.ec-online.net/Knowledge/BookReviews/lebowcoping.htm

GET ACTIVE: Alzheimer’s Stamp Petition

A grass-roots movement is building to collect signatures on a petition to ask the U.S. Postal Service to print and distribute a postage stamp recognizing Alzheimer’s Disease and its victims.

"What we need is an ‘Alzheimer’s Postage Stamp’" to help find a cure and treatment for the disease, says Kathy Siggins, whose husband, Gene, was diagnosed with Alzheimer’s in 1990. From her home base in Maryland, Ms. Siggins reached out to local Alzheimer’s organizations to help her gather support for this cause. She quickly discovered, however, that it would take more to persuade the Citizens Stamp Advisory Committee. It would require petitions, a lot of petitions, signed by hundreds of thousands of people.

Ms. Siggins of Frederick, Maryland, and Ageless Design, Inc., a Florida-based senior service organization, have created a way for people around the country to help promote awareness of Alzheimer’s and raise funds for research by petitioning the US Postal Service for an "Alzheimer’s Research" stamp.

Ageless Design, headed by Mark and Ellen Warner, is also collecting testimonial statements offered by signers of the petition, representing the human toll of Alzheimer’s disease. Ms. Siggins plans to bring these stories with her when she presents the petitions to the Citizens Stamp Advisory Committee hearing in October, 2000.

Visiting the "Alzheimer’s Research" postage stamp website, signing the petition and adding your comment is easy for anyone with access to the Internet. It takes very little time and can be done from home computers or computers at local libraries and community support centers. After reaching http://www.agelessdesign.com/alz-stamp.htm, petition signers need only spend a minute or two reviewing the petition and signing their name. If anyone needs any help they are also welcome to email Ellen Warner at ewarner@agelessdesign.com, or call her at (561) 745-0210.

TOP AD/CAREGIVING SITES: Vote for ElderCare Online

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 leading websites to collect them into a directory with rankings showing which are the most popular.

Just because a site is "popular" doesn’t mean it is the "best." Each of these 50-odd sites has a something unique and compelling about it. Over the last several months, I see more international sites and sites offering practical tips and resources. There are a few professional sites, as well as many personal sites.

You can vote for ElderCare Online and visit the list of sites by clicking on the "Top AD/Caregiving Sites" icon on the front page of ElderCare Online at http://www.ec-online.net. 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.


August 16 (Wednesday 9:00PM to 11:00PM EST) ElderCare Answers with Rich O’Boyle. "Communication Do’s and Don’ts: Tips for Talking With Aging Loved Ones."

August 17 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices. This week’s topic is: Communicating With Your Loved One with Dementia. How do you know what your loved one needs when they can’t tell you?

August 23 (Wednesday 9:00PM to 10:00PM EST) "ALZWell Tonight:" Host Susan Grossman leads a self-help group for caregivers.

August 24 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices. This week’s topic is: "When Conversation Ends: Using Body Language to Communicate."

August 30 (Wednesday 9:00PM to 11:00PM EST) ElderCare Answers with Rich O’Boyle. "Medicare HMOs: Understanding Your Options and Rights."

August 31 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices. This week’s topic is: "I Can’t Talk to My Loved One, But I Have to Talk to Someone."

Transcripts from previous discussion groups are posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm.

If you regularly attend an online support group or host one, please forward information on it to eldercareonline@hotmail.com. If you don’t have a chatroom or website, but are interested in hosting a session on ElderCare Online, please fill out the Community Activist form at http://www.ec-online.net/forms/formactivist.htm.


The ElderCare Beacon is published bi-weekly by ElderCare Online. To subscribe to this free newsletter, go to the main page of the website at http://www.ec-online.net and click on the button on the right hand side of the page. Add your e-mail address to the ListBot box and then fill out the basic demographic information. You do not need to include information that you think is too personal. A confirmation e-mail will be sent to you. Please reply to it to complete your subscription.

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