The Beacon Newsletter |
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, INSIDE THIS
ISSUE News and Views: Interview
with Beth Witrogen McLeod +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ 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
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
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