ElderCare Beacon Newsletter


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ElderCare Beacon
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October 15, 2000                                                                                     Vol. 3, No. 19
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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,

This month marks the third anniversary of ElderCare Online’s founding. I can hardly believe that we have been building and nurturing this community for so long and with such positive results. I would just like to briefly thank some people who have made an impact on this website and on me personally.

  • Friends and family: Mom and Dad, Jim and Joe Cervone
  • Some clear-headed business advisors: John Chaloner and John Riggs
  • Caregivers who make all of this worth the effort: Beth Witrogen McLeod, Edyth Ann Knox, Thumper, Doug Keck, Loretta/Bailheid and Victoria

When I started putting up a bunch of articles onto this clunky website three years ago, I never expected to have such an impact on myself and so many caregivers. I was not a caregiver – I had a background as a journalist and consultant. But I did see the Internet as a powerful avenue to educate people and share knowledge. In time, I also saw a deeper spiritual and emotional side of myself that grew as I served caregivers. I had always had some type of volunteer gig on the side, but it was usually managerial or technical in nature.

The impact on caregivers has been even more extensive. I recall a chat session late one night about two years ago. A nine-year old girl named Victoria and her mother joined us to help work through the challenge of living with her grandmother with dementia. When we talked with her and supported her I knew that this site was capable of making a huge difference. Time and time again I receive thank yous and compliments, but that one night with Victoria will always be the most important to me.

Please continue to share your ideas and support with other caregivers in the ElderCare Forum, to tell your friends about this site and to provide quality care to your aging loved ones. With cooperation and compassion we can continue our good work of informing, educating and supporting caregivers everywhere.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

ElderCare Forum: Caregivers Sharing Ideas and Support
Hot Topic: Questions and Answers on Death and Dying
Feature Articles: "Overcoming Negative Emotions" and "Reflections on Reflections"
Spotlight on Elder Abuse
Book Reviews: Caregiving: The Spiritual Journey of Love, Loss and Renewal
Top AD/Caregiving Sites: The Ribbon
Live Discussion Groups: Schedule for October
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: Questions and Answers on Death and Dying

Dr. John Carter has generously provided his time and expertise to answer questions that were e-mailed and compiled by us here at ElderCare Online. 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. Dr. Carter recently appeared on the PBS television special, "On Our Own Terms: Moyers on Dying."

Dr. Carter addresses ten serious issues that we raised and provides us with his professional advice and suggestions. The names and some of the situations have been altered to protect the anonymity of the parties. However, the situations and examples are all too common and are relevant to many family care situations.

Sample questions:

Q: Our father was always an active and dynamic man - he was president of a large company. But now he is immobilized by a stroke and only my mother seems to be able to communicate with him. How long can this go on? And when should we consider withholding life support measures? He would never want to be this way!

Q: What are the particular challenges that spousal caregivers face (e.g., an elderly wife caring for her husband with dementia) when making decisions about end-of-life care? Where do spousal caregivers get support for these types
of decisions when there are few family members available?

Visit the September-October Hot Topic, "Death, Dying and Late-Stage Alzheimer’s Disease," for the complete set of questions and answers. Join the interactive program at http://www.ec-online.net/Knowledge/HotTopics/deathanddying.htm.

FEATURED ARTICLES: "Overcoming Negative Emotions" and "Reflections on Reflections"

This month we have added a few new articles, including another one from our newest Contributing Editor, Avrene Brandt, Ph.D. Dr. Brandt is a clinical psychologist with a private practice in Media, Pennsylvania, and a consultant at the Greater Philadelphia Chapter of the Alzheimer’s Association and to geriatric and rehabilitation facilities in Pennsylvania, Delaware and New Jersey. When her father was stricken with illness, she became intensely aware of the demands placed upon his caregiver, her mother. It was observing her mother as a "textbook, stressed caregiver" that led Avrene to contact the Alzheimer’s Association, subsequently to become a consultant for them, and ultimately to write "Caregiver’s Reprieve: A Guide to Emotional Survival When You’re Caring for Someone You Love." She holds a Ph.D. in Clinical Psychology from the University of Massachusetts and a Masters of Science in Psychology from the University of Massachusetts.

Dr. Brandt’s second article is entitled "Overcoming Negative Emotions." It is a follow-up to her first article, which was featured in the last newsletter. She helps caregivers develop healthier emotional habits and offers some practical stress management techniques

Read the complete article at http://www.ec-online.net/Knowledge/Articles/emotion2.html along with other resources, books and related articles.

Contributing Editor Beverly Bigtree Murphy has added another practical article Reflections on Reflections: Bathing and Alzheimer’s Disease." This is the fourth in a series of articles that offers practical suggestions based on her past experiences as a caregiver to her husband, Tom. Beverly shares her ideas for making the bathing process as soothing and non-disruptive as possible. The article builds on our already comprehensive articles and skill builders on the subject.

The complete article, including resources, books and web links is available at http://www.ec-online.net/Knowledge/Articles/reflections.html

SPOTLIGHT ON ELDER ABUSE

It has been said that a society is judged on the way that it treats its most dependent and vulnerable citizens – the handicapped, young and elderly. All too often we hear horror stories of abuse and neglect by "professional" caregivers in nursing homes or from home care agencies. We also, perhaps even more sadly, hear stories of abuse by family members of "loved ones" living at home. Every elderly person deserves the dignity and respect of care by a truly loving and compassionate caregiver. We should be vigilant to the warning signs of abuse, especially when our impaired loved ones can not speak for themselves, due to dementia or other limitations.

This month we have added two complimentary articles on elder abuse. The first, "Elder Abuse: Definitions and Resources for Caregivers" by Rich O’Boyle, is a "by-the-books" article that includes definitions and resource contacts. It will give you all of the important information that you as a caregiver, relative or concerned friend needs. You can read the complete article at http://www.ec-online.net/Knowledge/Articles/elderabuse.html.

The second article, "Sometimes a Bruise Is Just a Bruise: Abuse and Alzheimer’s Disease" by Beverly Bigtree Murphy, highlights the importance of understanding the issue of abuse from the perspective of the Alzheimer’s caregiver. It does not excuse abuse or say it is OK sometimes, rather it emphasizes that caregivers are trying to do the best that they can under difficult circumstances. Unfortunately, professionals, legal authorities and even concerned friends, may misunderstand those difficult circumstances and assume the worst. I strongly recommend that all caregivers read both of these articles and share their experiences and ideas in the Forum. You can read Beverly’s article at http://www.ec-online.net/Knowledge/Articles/bruise.html

BOOK REVIEW: Caregiving: The Spiritual Journey of Love, Loss and Renewal by Beth Witrogen McLeod

Staff Writer Phyllis Laudano has prepared a new review of Beth Witrogen McLeod’s acclaimed book, "Caregiving: The Spiritual Journey of Love, Loss and Renewal." Many of you already know Beth through her chat sessions on this site or her numerous references on major website and magazine articles. Beth has been a personal inspiration to me and has been a consistent supporter of the work here on ElderCare Online.

You can read Phyllis’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.

TOP AD/CAREGIVING SITES: The Ribbon

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.

In each issue of this newsletter, we will mention one of the many excellent sites that comprise the Top AD/Caregiving Sites List. Brenda and the other webmasters and webmistresses have done an excellent job of creating unique and compelling sites that speak directly to family caregivers.

Just because a site is "popular" doesn’t mean it is the "best." But this time I want to point out the #1 site for the month of September, The Ribbon (http://www.theribbon.com) . Many of you regularly visit The Ribbon or receive the newsletter produced by them. The site is such a refreshing change from the commercial caregiving sites that have been proliferating lately. I love the site’s articles (which are practical and well-written) and the Nursing Home Toolkit. The Dedication Garden is a visually beautiful and emotionally touching tribute created by individual caregivers. Hats off to The Ribbon for creating such an inviting and informative resource.

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 October

October 18 (Wednesday 9:00PM to 11:00PM EST) "ElderCare Answers:" Host Rich O’Boyle leads a self-help discussion group on the topic of "Home Modification and Improvement Resources for Caregivers."

October 19 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group for dementia caregivers that emphasizes sharing experiences and best practices.

October 25 (Wednesday 9:00PM to 10:00PM EST) "ALZWell Tonight:" Host Susan Grossman leads a self-help group for dementia caregivers.

October 26 (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!).

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