The Beacon Newsletter


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The Beacon

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April 1, 2001                                                                                               Vol. 4, No. 7
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ElderCare Online – The Internet Community of Elder Caregivers

http://www.ec-online.net
ALZwell Caregiver Support

http://www.alzwell.com
“Tell me why – Show me how – Hold my hand” (sm)
Serving the Needs of Caregivers Since 1997

Dear Friends,

This past month has been very exciting for us here at ElderCare Online. I am very pleased to announce that we have joined with one of the leading Alzheimer’s sites, ALZwell (http://www.alzwell.com) to provide even more resources and interactive outlets for you. The merger brings together the strengths of the two websites: ElderCare Online’s broad and deep knowledgebase, respected partners, and interactive features mesh well with ALZwell’s specialized dementia resources, caregiver stories and feedback, and advocacy opportunities.

Over the next few months you will see the two sites consolidate a bit more – although you will still be able to access the best of both using all of your bookmarked links. Susan Grossman, who started ALZwell in 1996, will continue as an advisor to the two websites, focusing on community management and technical transition issues in 2001. We will highlight the best of both sites and create some new features with the goal of making it easier to find the practical information that you need, access to answers and top professionals, and interactive support services that help you manage day to day.

ALZwell has published the “Keepin’ Up With ALZwell” newsletter for the past few years. I will be assuming responsibility for that newsletter as well. Now, just writing this newsletter is a task in itself, so I will be combining the mailing lists for the two newsletters and creating a new format that uses the best of both newsletters. Essentially, I will add news and announcements from ALZwell into this publication. The new newsletter will be called simply The Beacon.

If you currently subscribe to both newsletters (the ElderCare Beacon and Keepin’ Up With ALZwell) then I ask your assistance in cleaning up the mailing list. Please send one of the newsletters back to me with the word DUPLICATE in the Subject Line. That way I will be able to eliminate multiple addresses from the list and keep your mailbox clean. If for any reason you want to be removed from either list altogether, include the word UNSUBSCRIBE in the Subject Line.

I want to thank so many of you for your kind words of support, your involvement in the community forums and your gracious assistance over the years. As we embark on a new period of working closer than ever with family caregivers, I ask for your continued support.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

News and Views: Interview with Beth Witrogen McLeod
Feature Article: Tips on… Being a Caregiver by Edyth Ann Knox
Caregiver Support Network: World Wide Chat Guide
Keepin’ Up With ALZwell: An Introduction to ALZwell
Top Alzheimer’s/Caregiving Sites: Illustrated Guide to Alzheimer’s Disease
Live Discussion Groups: Schedule for April
Subscription Information

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NEWS AND VIEWS: Interview with Beth Witrogen McLeod

Beth Witrogen McLeod is the acclaimed author and lecturer on the journey of caregiving. He accomplishments include the long-distance caring for both of her parents and two Pulitzer Prize nominations. Her insights into the caregiving journey come from experience -- she knows that worthwhile personal growth comes from confronting and overcoming difficult challenges.

She is the author of "Caregiving: The Spiritual Journey of Love, Loss and Renewal" and a sought-after lecturer. Beth shares her wisdom not only on caregiving, but also on the broader spiritual issues of living fully in the second half of life, including optimal health, inner healing, and self-renewal.

Beth and I caught up on the phone on March 20, 2001 to discuss topics that have been on my mind since the March American Society on Aging conference in New Orleans and recent comments by members in our community forums. Beth's message is best digested over a period of time, although I knew from the first times I read her work, heard her speak, and spent time with her in conversation that her message was powerful and appropriate for all of us regardless of our stage in life.

Beth is now the featured author on the “I, Caregiver” Channel at http://www.ec-online.net/icarechannel.htm. You can read the complete interview with her, excerpts from her book and a review of her book. You can go right to the interview at http://www.ec-online.net/Knowledge/Articles/mcleodinterview.html.

FEATURE ARTICLE:  Tips on… Being a Caregiver by Edyth Ann Knox


When most of us think of the “caregiver,” we think of Florence Nightingale or Mother Teresa who forgoes all personal needs and desires, and smilingly, single-handedly, and effortlessly cares for those who are in need. Some confuse being a caregiver with being co-dependent. Both of these images are wrong. In real life, caregivers are Everyman and Everywoman. We come from all walks of life, we cry, we hurt, sometimes we get mad, and sometimes we even will YELL! Being an effective caregiver requires that we acknowledge our role and embrace both the joys and pains of caring for a dependent loved one.

You can read Edyth Ann’s tips at http://www.ec-online.net/Knowledge/Articles/beingacg.html.

Edyth Ann has written a series of tips on caring for a loved one with dementia. The other tips are published on the Alzheimer’s & Dementia Care Channel at http://www.ec-online.net/alzchannel.htm.

CAREGIVER SUPPORT NETWORK: World Wide Chat Guide

We at ElderCare Online provide facilitated chat sessions three times a week, as well as frequent guest sessions with professionals from Columbia University and selected eldercare authors. I wish that we could offer chat sessions at all hours and every day of the week, but of course that is not possible. So we are offering the next best thing – a directory of high-quality chat sessions for caregivers.

The World Wide Chat Guide is a work in progress. We are starting with a handful of caregiving sites that have demonstrated an interest in expanding the availability of support discussion groups for dementia caregivers. These websites will provide access to the World Wide Chat Guide off of their websites so that caregivers will be able to find a group when THEY need it.

We will provide links to the chatrooms that have good attendance and experienced facilitators. I know how tired we all are of logging into a chatroom only to find it empty, defunct or chaotic. The Guide will be updated each month as new websites are added and we will try to highlight special sessions throughout the month. You can access the World Wide Chat Guide at http://www.ec-online.net/Community/chatschedule.htm.

If you host a chatroom off of your website that offers facilitated sessions (someone is designated to be there at the specified time, with or without a set topic), then please contact rich@ec-online.net. All I ask in return for being included in the Guide is that you post a prominent link to the Guide so that other chatrooms can benefit.

KEEPIN’ UP WITH ALZWELL: An Introduction to ALZwell

Susan Grossman e-mailed Keepin’ Up With ALZwell every two to three months while she was the publisher of ALZwell. I plan to include updates from the ALZwell site in every bimonthly issue of this newsletter. Every two weeks I will include links to the busy interactive features of the ALZwell site and highlight the latest additions to the Anger Wall, the Caregiver Stories, and the Reading Room. For those of you who are not familiar with ALZwell, here is the first of several regular introductions:

The Anger Wall is one of those unique features that make the Internet so amazing. While we embrace the joys of caregiving at every opportunity, we are all aware of the stresses and pains that can accompany caregiving. People from all walks of life use the Wall to post their emotional graffiti – and get that pressure off their chests. You can read posts to the Anger Wall or post your own at http://www.alzwell.com/gstbk.html.

Anyone can contribute to our library of Caregiver Stories. These personal accounts of the impact of dementia on our lives help others to understand that you are not alone – thousands of other people like you are out there grappling with the challenges of caring for a loved one with dementia. Therapists and counselors will tell you that keeping a journal of your experiences can help you to cope with painful emotions. Writing down your stories (NO, they don’t have to be in perfect English in perfect paragraphs!) will give you a permanent diary to look back on to see your own progress and to share with other loved ones as a testament to your loved one’s life. Read the latest caregiver stories at http://www.alzwell.com/Thisweek.html.

The ALZwell Reading Room will gradually be undergoing a renovation as it is integrated with the ElderCare Bookstore. The ALZwell Reading Room contains links to books and resources of value to dementia caregivers, including comments on individual books that we have actually read. We also include interviews with some of the authors, numerous excerpts from the books, pictures of the book covers, examples of the tables of contents, and links to purchase the books right online from Amazon.com. You can access the ALZwell Reading Room at http://www.alzwell.com/bookstore.html. You can also access the ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm.

Please stay tuned for updates and upgrades to ALZwell. It is quite an undertaking to manage two websites with limited resources and grand ambitions. Please continue to send me your comments at rich@ec-online.net.

TOP ALZHEIMER’S/CAREGIVING SITES: The Illustrated Guide to Alzheimer’s Disease

Understanding the complex chemistry and biology of the body is not easy. How long ago was it since you took those classes in high school? And how much it has changed since then! I was very happy to find this well-designed website that gives a good (and colorful) overview of Alzheimer’s Disease. The section on “What Causes the Disease” is well-done, serving as a good introduction to the pathology of Alzheimer’s Disease.

To access “The Illustrated Guide to Alzheimer’s Disease” website go to http://www.diseases-explained.com/Alzheimers/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.

LIVE DISCUSSION GROUPS: Schedule for April

We have several new chat sessions. Please take a look at our new schedule and join one of the groups if you can work it into your schedule. All times are Eastern Standard Time (GMT –5).

This chat schedule only contains listings of discussion sessions hosted on the ElderCare Online website. For chats hosted on other websites, consult the new World Wide Chat Guide at http://www.ec-online.net/Community/chatschedule.htm.

April 4 (Wednesday 1:00 to 2:00PM EST) “Coffee Talk:” Host Rich O’Boyle welcomes caregivers for a social and networking discussion group on the topic of “Meeting Other Caregivers.”

April 4 (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 “Eating/Feeding Tips.”

April 5 (Thursday 9:00 to 11:00PM 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.

April 11 (Wednesday 1:00 to 2:00PM EST) “Coffee Talk:” Host Rich O’Boyle welcomes caregivers for a social and networking discussion group on the topic of “Meeting Other Caregivers.”

April 11(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 “Caring for the Caregiver.”

April 12 (Thursday 9:00 to 11:00PM EST) “ElderCare Answers:” Host Rich O’Boyle leads a self-help group for caregivers on the topic of “Medical Research on the WWW.”

April 18 (Wednesday 1:00 to 2:00PM EST) “Coffee Talk:” Host Rich O’Boyle welcomes caregivers for a social and networking discussion group on the topic of “Meeting Other Caregivers.”

April 18 (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 “Caregiver: Get a Life!”

April 19 (Thursday 9:00 to 11:00PM 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.

April 25 (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 “Dangerous Weather.”

April 26 (Thursday 9:00 to 11:00PM EST) “ElderCare Answers:” Host Rich O’Boyle leads a self-help group for caregivers on the topic of “Making the Nursing Home Decision.”

Transcripts from previous discussion groups and guest sessions are posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm. From now on, we will only be archiving the transcripts of guest speakers.

SUBSCRIPTION INFORMATION

The 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 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.

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