ElderCare Beacon Newsletter


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ElderCare Beacon
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November 1, 2000                                                                   Vol. 3, No. 20
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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,

Children and teens have been important visitors to ElderCare Online from the very first chat sessions that we held three years ago. I remember nine-year old Victoria in Canada and several adult caregivers who voiced concerns for their teen-aged children who shared the care. The issues and concerns of teen-agers became even more critical to me when I met several adult caregivers at the World Alzheimer’s Congress last summer in Washington, D.C. They asked me repeatedly for advice and resources to help their teens cope with the challenges of living with a parent with Early Onset Alzheimer’s Disease or a grandparent who was increasingly disoriented and emotionally distant.

So, this month ElderCare Online is launching a Hot Topic dedicated to helping teens cope with caregiving challenges in collaboration with the Long Island Alzheimer’s Foundation. It will become a permanent resource center always accessible on the site. This way, teens will have access to the articles, interactive features and resources from now on. Read more about the upcoming enhancements to the Teen Resource Center further down in the newsletter. Please pass on word of this unique resource to school counselors, religious advisors and care managers.

The ElderCare Forum has been very busy lately. We have several discussion topics ("threads") started every week with participation by our Moderators and other caregivers. I just cleaned up the design a little bit so it is better organized. I have started to add a partial list of interesting discussions in this newsletter so that those of you who don’t regularly join the discussion will be enticed. I need to remind you that we do give free books to people who are active participants in the Forum and the chatroom. So take a little time to share your experiences and wisdom with other caregivers.

We also have several new additions to our burgeoning library of articles, book reviews and poems. ElderCare Online is one of the most comprehensive resources for eldercare information on the Internet. I frequently get requests from care management and wellness companies to reprint these articles, which is a good sign of the recognition that we are getting. I give so much credit to our Contributing Editors and Mentors for this.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

ElderCare Forum: Caregivers Sharing Ideas and Support
Hot Topic: Resources for Teens
Feature Articles: "Don’t Feel Guilty" and "Does He Still Know Who You Are?" by Beverly Bigtree Murphy
Book Reviews: Three Caregiving Books Reviewed
Caregiver Support Network: Dorothy Womack Adds New Poems
Neighborhood Networks: New State and Local Resources Added
Top AD/Caregiving Sites: Poems, Prayers and Promises by Brenda Race
Live Discussion Groups: Schedule for November
Subscription Information

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ELDERCARE FORUM: Caregivers Sharing Ideas and Support

Since the ElderCare Forum came back online last month we have seen a surge is usage. So many new discussions have started and old ones revived that I thought I would like to highlight a few of them. The Forum is our community bulletin board – a place to post ideas, concerns and small victories so that others can share in them. That means that if you have a problem or need advice, we have a safe and constructive forum where you can raise it.

The Forum is regularly visited by dozens of hands-on caregivers, as well as our moderators, activists and mentors – both professionals and experienced caregivers. Barbara Bridges, Edyth Ann Knox and Douglas Chu are among those who are available to respond to your postings.

Recent posts:

You can follow these and many other discussion threads in the ElderCare Forum. Each month we reward a few new participants with free caregiving books or products from our affiliate partners. Please join in the community to share your wisdom and support your fellow caregivers. Access the ElderCare Forum at http://www.ec-online.net.

HOT TOPIC: Resources for Teens

This month I am very pleased to launch ElderCare Online’s Teen Resource Center in collaboration with the Long Island Alzheimer’s Foundation. For the past nine months or so we have been planning and preparing this unique resource for family caregivers and the professionals who help them. While we will focus on Teens throughout the month, the Teen Resource Center will remain an integral part of the ElderCare Online site going forward, ultimately with its own newsletter, discussion groups and special features.

Initially, the Teen Resource Center will be comprised of a series of articles written directly for teens aged 13-19. We will also launch a list-serv-type mailing list group through Egroups and a "teens-only" message board in the ElderCare Forum. For the most part, we will be leveraging our experience as a dynamic community for adults so teens can have the same benefits of information, education and support that ElderCare Online has always strived to provide.

I am looking for one or two adult caregivers who have had experience with teens (either as a counselor or as a parent while caregiving) to assist in monitoring the community. The community will be restricted to teens only, but we still need to be able to provide guidance and support from adult "monitors." Please e-mail me directly at rich@ec-online.net if you are interested in participating. Initially, I will be monitoring the interactive features of the resource center and stimulating discussion. If you are a parent, we want you to feel secure that your teen-aged child is both able to express himself/herself and has access to a caring adult if things get too difficult.

Articles available throughout this month for teens:

  • What is Caregiving?
  • The Natural Course of Aging
  • You Are a Caregiver
  • Questions and Answers from Other Teens
  • Dementia and Caregiving
  • Coping With Caregiving
  • Practical Ways You Can Help
  • Things to Do With Your Loved One
  • Glossary of Health Conditions and Diseases

Resources available throughout this month for teens and adults:

  • Reading list for professionals
  • Reading list for families
  • Reading list for teens
  • Reading list for children (aged 3-12)

Interactive features available throughout this month (for teens only):

  • TeenCaregivers Egroups mailing list
  • "Teens Only" message board in the ElderCare Forum
  • Websites for and by Teens

We welcome you as a family caregiver or professional to review the Teen Resource Center and refer your children, relatives, school counselors, clients, religious leaders and support group friends to visit it. As you know, ElderCare Online doesn’t have a million-dollar dot.com advertising budget – we rely almost exclusively on word-of-mouth. That means that in order to get this resource out to teens in need, you have to pass the word along. Please visit the Teen Resource Center at http://www.ec-online.net/Knowledge/SolutionSets/teens.htm.

FEATURED ARTICLES:

Contributing Editor Beverly Bigtree Murphy has published two more articles on the site this month based on her caregiving experiences for her husband Tom. Beverly writes with a style and voice that is straight-forward and emotionally insightful. Her perspective is consistently positive, even though she addresses some of the hardest issues that dementia caregivers face.

- "Don’t Feel Guilty" is one of Beverly’s more insightful articles. She uses her experience caring for her husband and numerous support group meetings to show us that "guilt" is very often a form of "grief." Read the complete article at http://www.ec-online.net/Knowledge/Articles/guiltmurphy.html.

- "Does He Still Know Who You Are?" is a poignant article that empowers caregivers to look beyond the comments that others may have about your loved one. Through examples, Beverly shares insights into understanding the brain disease suffered by a loved one with dementia. You may want to e-mail this article to family members, colleagues and non-caregivers to educate them about Alzheimer’s Disease. Read the complete article at http://www.ec-online.net/Knowledge/Articles/murphyknow.html.

Beverly has contributed six superb articles to the site. You can read them all on the Alzheimer’s & Dementia Care Channel where Beverly is our Featured Author. Read more about dementia care at http://www.ec-online.net/alzchannel.htm.

BOOK REVIEW: Three Caregiving Books Reviewed

My friend Dale Anglund has provided us with three new book reviews this month. I asked Dale to try his hand at writing these reviews because he has so many years experience as a hands-on caregiver for friends and relatives.

"The Best Friends Approach to Alzheimer's Care" by Virginia Bell and David Troxel. The authors use their decades of collected experience to offer family and professional caregivers unique insights that help them to improve quality of life for their loved ones with Alzheimer’s Disease.

"Caregiver’s Reprieve: A Guide to Emotional Survival When You're Caring for Someone You Love" by Avrene Brandt, Ph.D. Here's a practical look at the emotional challenges of caring for an aged or chronically ill loved one. Dr. Brandt is the author of three articles that help caregivers grapple with their emotions.

"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 L. Mace, M.A., Peter V. Rabins, M.D.,M.P.H. This is the "Bible" for families who are giving care to persons with Alzheimer’s Disease. For this third edition, the authors have retained the structure, scope and purpose of the original book, while thoroughly updating chapters to reflect the latest medical research and the current delivery of care.

You can read Dale’s review in the ElderCare Bookstore. Numerous other books are reviewed by our staff in the ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm. The ElderCare Bookstore is one of the most comprehensive collections of caregiving books available on the Internet. We offer over 250 titles, arranged on "bookshelves" according to topic, theme or subject matter. Whenever you purchase a book from the bookstore (or any book, music CD or video DVD when you click through our bookstore), ElderCare Online receives a small commission (usually between 5 and 15%) – This helps to keep the site free for all family caregivers.

CAREGIVER SUPPORT NETWORK: Dorothy Womack Adds New Poems

Mentor Dorothy Womack has added several new poems to her personal pages on ElderCare Online. She continues to write so many personal poems that provide inspiration and emotional relief to caregivers. Dorothy taps into her many years of dementia caregiving which makes these poems so touching to caregivers.

You can access her personal pages – and the personal pages of the other Mentors – at http://www.ec-online.net/Community/Activists/can.htm.

NEIGHBORHOOD NETWORKS: New State and Local Resources Added

There are many directories of eldercare providers and services on the Internet. Unfortunately, many of them are out of date or too cumbersome for quick reference. Over the past several months, ElderCare Online has been building an easy-to-use guide to state and local resources across the United States.

Each "Neighborhood Network" contains numerous links to the state and local resources that caregivers need the most: tax forms and publications, legal assistance hotlines, insurance counseling volunteers, Medicaid applications and benefits, county services and local Alzheimer’s support groups.

This month, we have added several new Neighborhood Networks to our growing directory: Alabama, Colorado, Hawaii, Maine and Nevada. You can access the national directory through our Community Center, or go directly to http://www.ec-online.net/Community/Neighborhood/neighborhood.html.

TOP AD/CAREGIVING SITES: Poems, Prayers and Promises by Brenda Race

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.

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.

"Poems, Prayers and Promises" by Brenda Race is this month’s selected site. Brenda honors her mother and perhaps help others who are traveling the same road which she took. She has prepared several poems, anecdotes and inspirational passages on her site. "I would like her life and her rebirth to be remembered not as the end but rather as a beginning.," Brenda says. "She helped so many while she was passing through this life that I want her to be able to continue to help others now! Her spirit indeed lives on in myself and in all whom she touched while here!"

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 November

November 1 (Wednesday 9:00PM to 11:00PM EST) "ElderCare Answers:" Host Rich O’Boyle leads a self-help discussion group on the topic of Medicare HMOs.

November 2 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group for dementia caregivers that emphasizes sharing experiences and best practices.

November 8 (Wednesday 9:00PM to 10:00PM EST) "ALZWell Tonight:" Host Susan Grossman leads a self-help group for dementia caregivers.

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

November 15 (Wednesday 9:00PM to 11:00PM EST) "ElderCare Answers:" Host Rich O’Boyle leads a self-help discussion group on the topic of Home Modifications and Improvements.

November 16 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group for dementia caregivers that emphasizes sharing experiences and best practices.

November 22 (Wednesday) Happy Thanksgiving! No chat scheduled.

November 23 (Thursday) Happy Thanksgiving! No chat scheduled.

November 29 (Wednesday 9:00PM to 11:00PM EST) "ALZWell Tonight:" Host Susan Grossman leads a self-help group for dementia caregivers.

November 30 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group for dementia caregivers that emphasizes sharing experiences and best practices.

Transcripts from previous discussion groups and guest sessions 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 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!).

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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