ElderCare Beacon Newsletter

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ElderCare Beacon
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September 15, 2000                                                                 Vol. 3, No. 17
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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,

It has been about one month, but finally the ElderCare Forum is back up and running. We had some fairly major technical work on it – enhancing it and making it more reliable and stable. This long wait will be worth it. You can access the Forum at http://64.225.90.52/cgi-bin/Ultimate.cgi?action=intro. Remember, you don’t have to register to use the Forum, but if you register, we can forward responses to your postings directly by email, notify you of enhancements and reward you for active participation.

We are continuing our monthly Hot Topic with two excellent guest speakers: Drs. Joanne Lynn and John Carter are leaders in end-of-life issues and they will be joining us for several hours later this month in our chatroom. I invite all of you to attend to ask questions about quality of life and ethical issues.

Finally, I want to point out a new addition to our list of Caregiver Homepages. Tim Brennan is not a caregiver himself – he is an individual with Alzheimer’s Disease. His website and message are so powerful because he helps caregivers better understand how the disease affects their loved ones’ dignity and selfhood. Read more about Tim below and please pay a visit to his website.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

Hot Topic: New Additions to the Death & Dying Hot Topic
ElderCare Forum: It’s Back!
Caregiver Home Pages: Tim Brennan’s Website
Top AD/Caregiving Sites: Vote for ElderCare Online
Live Discussion Groups: Schedule for September
Subscription Information

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HOT TOPIC: New Additions to the Death & Dying Hot Topic

Those of you who have been watching the PBS special "On Our Own Terms: Moyers on Dying" will be able to appreciate how difficult it is to put together the Death, Dying & Late-Stage Alzheimer’s Disease Hot Topic. We started out with a few articles, book reviews and site links. At mid-month, I have added a few more items.

Of greatest interest are the two expert discussion groups that will be held in the Elder Caregiving Chat Room. These real-time discussion groups are unique opportunities to get together in a comfortable setting to discuss serious issues with top-notch professionals. We have also added two more book reviews: "My Mother’s Voice" by Sally Callahan and "Hard Choices for Loving People" by Hank Dunn.

On Monday, September 18, Dr. John Carter of Mt. Sinai Medical Center and the Jewish Home and Hospital in New York will lead a discussion on ethics and palliative care. Dr. Carter is a graduate of Jefferson Medical College, Philadelphia, PA. He completed an internal medicine residency at Albert Einstein Medical Center, Philadelphia, PA and completed a geriatric medicine fellowship at Mt. Sinai Medical Center, New York, NY. At present, he is the Co-Director of the Greenberg Center on Ethics, Jewish Home and Hospital, New York, NY and an attending physician at the Hertzberg Palliative Care Institute, Mt. Sinai Medical Center, New York, NY (as well as assistant professor in both the Departments of Geriatrics and Medicine at Mt. Sinai Medical Center in New York.

On Wednesday, September 20, Dr. Joanne Lynn of the Center to Improve Care of the Dying in Washington, D.C. will lead a discussion on quality of life issues for terminally ill individuals. Dr. Lynn is an internationally known leader in helping terminally ill patients improve quality of life. Her writings focus on helping all people approach the end of life with greater awareness of what to expect and greater confidence about how to make the end of our lives a time of growth, comfort and meaningful reflection. She is the Director of the Center to Improve Care of the Dying (CIDC) at George Washington Medical School in Washington, D.C. She is also the co-author of "Handbook for Mortals: Guidance for People Facing Serious Illness."

I encourage all of you to attend these sessions. If you know that you will be unable to attend, please submit a brief (and concise) question to askcasey@ec-online.net and I will try to have the guest hosts respond to them during the chat sessions.

See the chat schedule below for the complete listing of regular and special real-time discussion groups.

ELDERCARE FORUM: It’s Back!

After an extended one-month break, the ElderCare Forum is back up and running. What started out as a routine maintenance job turned into a series of technical snafus and delays. I apologize to the caregivers who had been using the Forum as a part of your non-traditional support system. The upgrades should prevent these types of delays in the future.

You can access the Forum at http://64.225.90.52/cgi-bin/Ultimate.cgi?action=intro.

For those of you who are not familiar with it, the ElderCare Forum is an easy-to-use hi-tech bulletin board. All you have to do is type in a question, comment or idea and it becomes available to caregivers all over the country (and world). It is a fast and efficient way to share ideas, ask a question or offer support to another isolated caregiver.

Our message board is different from many out there on the WWW. We have put a lot of time and effort into integrating the most user-friendly technology. The real difference is our community of supportive professionals and family caregivers. For example, Barbara Bridges, a well-known author and professional caregiver is the Moderator of the Forum’s Alzheimer’s & Dementia Care section. She offers tips and helps caregivers to work through their challenges.

While it is not necessary to register as a Forum member to post, I encourage you to. As a registered user, you will be able to receive e-mail responses to your discussion items, updates on Forum improvements and features and "Respite Rewards" for active participation. We give a free caregiving book or other gift to several new registrants each month.

You can access the Forum at http://64.225.90.52/cgi-bin/Ultimate.cgi?action=intro.

CAREGIVER HOME PAGES: Tim Brennan’s Website

Most of the caregiver homepages included in our online community have been created by current or former caregivers. But recently we added a new site to our online community that was created by a man with Early Onset Alzheimer’s Disease.

"Through His Eyes: Living With Alzheimer’s" by Tim Brennan is a warm site of articles and poetry straight from the mind and heart of a man with Alzheimer’s Disease. For caregivers, I think that it opens up a new level of understanding of our loved ones who have the disease. And for people with the disease, it reveals that it is still possible to live with dignity and confidence despite ever increasing "cobwebs."

Please visit Tim’s website and the other Caregiver HomePages in the ElderCare Community Center at http://www.ec-online.net/Community/members.htm. If you have your own site and would like it featured, please let us know.

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. In August, ElderCare Online was ranked #4 – Thank you for all showing your support!

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. 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.

LIVE DISCUSSION GROUPS: Schedule for September

You may e-mail advance questions to the guest hosts (Drs. Carter and Lynn) directly to me at askcasey@ec-online.net. We will make every effort to answer your concise and direct questions. Transcripts from previous discussion groups and guest sessions are posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm.

September 18 (Tuesday 9:00PM to 11:00PM) with John Carter, M.D. (Ethical Issues). Dr. Carter is the Co-Director of the Greenberg Center on Ethics and an attending physician at the Hertzberg Palliative Care Institute in New York.

September 20 (Wednesday 9:00PM to 11:00PM EST) with Joanne Lynn, M.D. (Quality of Life). Dr. Lynn is the author of "Handbook for Mortals: Guidance for People Facing Serious Illness" and the director of the Center to Improve Care of the Dying.

September 21 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices.

September 27 (Wednesday 9:00PM to 10:00PM EST) "ALZWell Tonight:" Host Susan Grossman leads a self-help group for dementia caregivers.

September 28 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices.

If you regularly attend an online support group or host one, please forward information on it to info@ec-online.net. 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.

SUBSCRIPTION INFORMATION

The ElderCare Beacon is published bimonthly by ElderCare Online. To subscribe to this free newsletter, go to the main page of the website at http://www.ec-online.net and add your e-mail address to the white box and click on the "Subscribe" button (just one click!).

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