ElderCare Beacon Newsletter

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ElderCare Beacon
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September 1, 2000                                                                                    Vol. 3, No. 16
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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,

The end of summer usually signals an end of growth and the slowing down of the hectic pace. But it means a continued growth here at ElderCare Online. We have been working to strengthen the technical underside of the site – which usually isn’t visible to web surfers. We have shifted to a more reliable server and that should become apparent to you in faster load times and a more reliable connection. However, the Forum is still undergoing renovation and will be back up "in the fullness of time."

This month we are featuring a strong line-up of informative articles, expert discussion groups and new authors. I am so happy to welcome Beverly Bigtree Murphy as a Contributing Editor and Edyth Ann Knox as a guest writer. Both bring a wealth of personal and professional caregiving experience to our community. They are joining our existing writers, such as Mark Edinberg, PhD. and Phyllis Laudano. Our discussion groups are quite active.

Using the "Hot Topic" of Death and Dying as a centerpiece, we will be adding several new articles and chats. What is most exciting is our linking with the ground-breaking television special "On Our Own Terms" by Bill Moyers. This television program is promising to be a real discussion starter for people across the country on a difficult topic: how we cope with death in our families. We will be using the Moyers special to stimulate discussions about end stage Alzheimer’s Disease, which is not really a focus of the special. We are one of several communities of interest that have been stimulated by the program’s outreach staff. Later this month I will be announcing two special expert chat sessions related to death and dying.

I want to thank all of you loyal members and active participants who continued to visit the website even during our technical difficulties. I also want to welcome the newest members and newsletter subscribers (there have been so many!). In the coming months I think you will see that ElderCare Online is a great resource to answer so many of the questions that you have; give you greater mastery over the skills necessary to maintain quality of life; and provide a strong community of friendly support that will make the difference in your caregiving challenges.

Kind Regards,
Rich O’Boyle
ElderCare Online

 

INSIDE THIS ISSUE

Hot Topic: Death, Dying and Late-Stage Alzheimer's Disease
ElderCare Bookstore Upgraded
Featured Articles: "Where Is the Joy in Alzheimer’s Disease Caregiving?" and "To Diaper Or Not To Diaper: Alzheimer’s Disease and Incontinence" by Beverly Bigtree Murphy
Caregiver Support Network: Jan Allen Interview and Womack Poems/Site/Article
Top AD/Caregiving Sites: Vote for ElderCare Online
Live Discussion Groups: Schedule for September
Subscription Information

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HOT TOPIC: Death, Dying and Late-Stage Alzheimer's Disease

Alzheimer's Disease is, sadly, progressive and incurable. The one consolation is that the caregiver and family members can plan and prepare for their loved one's passing. Early in the disease, the family has probably made legal and financial arrangement. But as the end stages emerge, emotional and quality-of-life preparations become paramount.

This month's Hot Topic is scheduled to coincide with the PBS special "On Our Own Terms: Moyers on Dying." Issues raised during this landmark 4-part series will stimulate discussions among professionals and family caregivers. You can watch the program on September 10, 11, 12 and 13 (9:00PM EST) and then join us in our chat room for an informal discussion of that night's program.

Furthermore, throughout the month of September, we will have noted experts online to discuss pertinent death and dying matters with you. Join us for one (or all) of our scheduled sessions listed below, or review the transcripts as they are posted. We are also adding several new articles and book reviews that relate to this topic:

  • Talking With Aging Parents About Death by Mark Edinberg, PhD.
  • Talking About End-of-Life Planning by Mark Edinberg, PhD.
  • Hospice and Alzheimer’s Disease: One Family’s Story by Edyth Ann Knox (AKA Bubblehead)
  • Handbook for Mortals by Dr. Joanne Lynn (book review by Phyllis Laudano, Staff Writer)

We will be hosting a special series of real-time discussion groups in the Elder Caregiving Chatroom September 10 through 13 after the "On Our Own Terms" television program airs each night. While the sessions will be informal, we will be discussing the issues raised during that night’s program. We will also have our regular "ALZwell Tonight" and ZuZu’s Thursday night chat session. However, during the second half of the month we will have two special guests focusing on Ethical Issues and Quality of Care (more on that in the next issue of the ElderCare Beacon).

I have also selected a variety of top-notch websites and added them to "Casey’s Top Pick’s on the WWW." We will be featuring several innovative and consumer-focused sites such as listings of grief support groups, a nursing home life expectancy estimator and several other "cool" sites. In particular, I recommend that you visit "Memories of Milly," an online journal written by Edyth Ann Knox about her family’s experiences caring for her mother-in-law.

You can access the new "Hot Topic" mini-site at http://www.ec-online.net/Knowledge/HotTopics/deathanddying.htm.

ELDERCARE BOOKSTORE UPGRADED

ElderCare Online provides one of the largest libraries of articles, booklets and educational modules. But we know that our writers can’t provide you with absolutely all of the information that you need to provide the best possible care to your loved ones.

Since 1997, we have partnered with Amazon.com to provide online access to over 250 caregiving books. Through this partnership, you can read online reviews, find related books, research authors and purchase books online at a substantial discount.

Recently, I started a process of rebuilding the original "ElderCare Bookstore" to provide more books, better organization and book reviews of popular titles. Our Reader’s Choice Booklist gives both new and experienced caregivers a listing of some of the most valuable books. The general bookshelves cover titles that fall under our existing channels (such as Alzheimer’s & Dementia Care, Longevity & Wellness et al.). I have also pulled out some of the most popular titles and compiled them into "Specialty Bookshelves" under topics such as Kids & Teens, Family Dynamics, Behavior Management, Memoirs and Medical Encyclopedias.

You can access the new ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm

FEATURED ARTICLES: "Where Is the Joy in Alzheimer’s Disease Caregiving?" and "Alzheimer’s Disease and Incontinence: To Diaper Or Not To Diaper?" by Beverly Bigtree Murphy

This month we are featuring two articles from our newest Contributing Editor, Beverly Bigtree Murphy. Beverly is a certified rehabilitation counselor and former caregiver to her husband who had Alzheimer’s Disease. She is the author of "He Used to Be Somebody: A Journey Through Alzheimer’s Disease Through the Eyes of a Caregiver." (available in the ElderCare Bookstore in the "Memoirs Bookshelf") Her unique experience as a mental health professional and hands-on caregiver is combined with a spiritual orientation that is both practical and insightful. Beverly often brings ideas and examples from her Native American heritage to help caregivers understand themselves and their roles as caregivers. She also publishes articles on her own website, "Incontinence Care for Alzheimer’s Families" at http://www.bigtreemurphy.com.

"Where Is the Joy in Alzheimer’s Disease Caregiving?" and "Alzheimer’s Disease and Incontinence: To Diaper Or Not To Diaper?" are her first contributions to our growing knowledgebase of Alzheimer's Disease and caregiving articles. Each article reflects Beverly's years of experience as a health care professional and hands on family caregiver. In her first article, she reflects on her own challenges and choices as caregiver to her husband. With her background in Native American spirituality, she finds strength in the rituals of caregiving and passes along that wisdom to you. In her second article, she shares her pragmatic approaches to managing the inevitable incontinence associated with Alzheimer’s Disease. Her straight-forward examples and suggestions on hygiene will relieve the frustrations that most caregivers feel when faced with urinary and bowel incontinence.

Both articles appear on the front page of ElderCare Online at http://www.ec-online.net and in the Alzheimer’s & Dementia Care Channel at http://www.ec-online.net/alzchannel.htm.

I encourage you to share your own examples of "The Joy of Caregiving" and managing incontinence in the ElderCare Forum (as soon as it is up and running again). I also suggest that you visit Beverly’s website (http://www.bigtreemurphy.com) and perhaps buy her book from the bookstore. Please welcome her to our community.

CAREGIVER SUPPORT NETWORK: Jan Allen Interview and Womack Poems/Site/Article

Two of our most active Mentors have added interesting and uplifting articles to their personal pages. Jan Allen was recently interviewed by Nursing Assistant Monthly, an educational journal for professional caregivers. Jan is a leader in her field as a supervisor of adult day care programs. She spoke with the journal about her ideas for maintaining high levels of functioning in dementia patients in day care. While the target audience is professional aides at facilities, you as a family caregiver can also learn "from the pros" by reading this article.

Dorothy Womack continues to add articles, poems and mini-sites to her personal pages. In particular, I would point out a warm article about "Honoring Thy Father and Mother." This one should strike a chord in many of you who are caring for an aging parent. She has also built a mini-site focused on humor called "Blue Skies." This mini-site compliments her other spiritual and personal mini-sites. Of course, Dorothy has also published a series of uplifting poems this month, many of them dedicated to her friends and other Loved Ones close to her.

You can access their personal pages at http://www.ec-online.net/Community/Activists/can.htm.

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

September 6 (Wednesday 9:00PM to 10:00PM EST) "ALZWell Tonight:" Host Susan Grossman leads a self-help group for dementia caregivers.

September 7(Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices.

September 10 (Sunday 10:30PM to 12:30AM) Open discussion about the television program "On Our Own Terms: Moyers on Dying"

September 11 (Monday 10:30PM to 12:30AM) Open discussion about the television program "On Our Own Terms: Moyers on Dying"

September 12 (Tuesday 10:30PM to 12:30AM) Open discussion about the television program "On Our Own Terms: Moyers on Dying"

September 13 (Wednesday 10:30PM to 12:30AM) Open discussion about the television program "On Our Own Terms: Moyers on Dying"

September 14 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices.

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.

SUBSCRIPTION INFORMATION

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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