The Beacon (tm)
April 15, 2001
Vol. 4, No. 8
ElderCare Online - The Internet Community of Elder Caregivers (tm)
ALZwell Caregiver Support (tm)
"Tell me why - Show me how - Hold my hand" (sm)
Serving the Needs of Caregivers Since 1997
Ah, Spring seems to finally be here. Many of our bulbs have popped out of the ground and
are starting to open their flowers. These are such a welcome sight. The Winter months are
particularly hard on many of us: depression and illness increase during these months. But
now is the time to be proactive and take some time for yourself.
Step outside and get some exercise! Go for a walk around the block or down the road and
back. Bring your loved one with you! Start slowly and gradually you will see that your
spirits and your health improve. Exercise is critical to your physical and emotional
wellbeing. What better time than Spring to feel the sun on your face and to smell the
flowers. Remember that we have numerous articles in the I, Caregiver Channel that deal
with healthy aging, stress management and taking care of yourself.
Our latest articles are about eating and nutrition for people with Alzheimer's Disease,
particularly tips on feeding a person affected by the disease. Edyth Ann Knox has written
these tips, along with a half-dozen others to share her years of caregiving experience.
Edyth Ann provide solid examples, not just lists of bulleted points without explanation.
One little comment: we have made some small changes to the ElderCare Forum (anticipating
some more significant upgrades in the next week). We have added a whole new crop of
"smilies." These are little graphical icon that you can attach to the messages
that you post. Sure some of them are silly, but it is a fun way to add some color and
emotion to the message board. Read more about the Forum below and come by and visit.
ElderCare Online and ALZwell Caregiver Support
INSIDE THIS ISSUE
News and Views: Alzheimer Research Forum
Feature Article: Tips on... Feeding Someone with Dementia (Part 1)
The Forum: Life's Passage: Dementia and Approaching Death
Caregiver Support Network: World Wide Chat Guide
Keepin' Up With ALZwell: A New Look at ALZwell
Top Alzheimer's/Caregiving Sites: Alzheimer's Poetry
Live Discussion Groups: Schedule for April
NEWS AND VIEWS: Alzheimer Research Forum
ElderCare Online is beginning to collaborate with the Alzheimer Research Forum (http://www.alzforum.org), a non-profit
center dedicated to promoting research into Alzheimer's Disease. The Alzheimer Research
Forum provides one of the best resources for scientific researchers and doctors, with
summaries of research, clinical studies, scientific abstracts and other vital information.
While it is primarily written for professionals, I think that we all would benefit from
taking some time to familiarize ourselves with the literature and language of medicine.
I will be adding links and news clips from the Alzheimer Research Forum directly into our
message board, the ElderCare Forum in our "News and Research" section. In the
future, our two organizations will be cooperating on projects that help family caregivers
to better understand the underlying scientific and clinical issues of Alzheimer's Disease
and other forms of dementia. You may access the "News and Research" section of
the ElderCare Forum at http://220.127.116.11/cgi-bin/ultimatebb.cgi?ubb=forum&f=26
or just go to the front page and click on "ElderCare Forum."
FEATURE ARTICLE: Tips on... Feeding an Individual with Dementia (Part 1)
This caregiving tip comes in two parts: one for the early and middle stages of dementia
and one for the late stage The eating problems associated with these stages can be very
different, so what works earlier in the disease will not pertain to the later stage.
In the early to mid stages many things can develop eating problems for the individual
affected by Alzheimer's Disease. The sense of taste can change leading to a craving for
sweets. But on a more basic level, the individual may have difficulty telling what is food
and what isn't, as well as difficulty in knowing what to do with utensils and even what to
do with the food at hand.
Read the complete set of ten detailed suggestions at http://www.ec-online.net/Knowledge/Articles/eatingtip1.html.
THE FORUM: Life's Passage: Dementia and Approaching Death
Participation in the Forum has grown substantially over the last few months. Our helpful
moderators have stimulated the conversations and new members have begun to use the message
board as a sounding board and support system.
One of the most informative and heartfelt discussion "threads" has been an
online diary of one family's caregiving experience as their loved one neared death. Vicki
and Greg from Alaska shared their story over a one-month period. From February 28 until
their grandmother's passing on March 30, they posted their daily experiences, observances,
feelings and fears. It is a beautiful, honest and informative diary - one that every
Alzheimer's caregiver should read. It lifts the veil of mystery and denial that many of us
(me included) use to avoid issues of death. Thank you Vicki and Greg for letting me (and
all of us) participate and learn. I believe that we can all prepare for approaching death
by reading this diary.
To read it chronologically, click on the link and then scroll all the way to the bottom.
The entries are posted on top of each other, so it will feel like you are reading it
backwards. Once you get the hang of it, it will go much more smoothly. Start on Page 5 and
work your way back to page 1. The diary begins at this link: http://18.104.22.168/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=9&t=000011&p=5
Our community Forum has grown substantially over the last two months. The number of
registered users has more or less doubled. This is one of those situations where having
more and more people participating makes the user experience better for everyone involved.
It should serve as encouragement to more of you to join in (either just by reading and
"lurking" or by posting messages and replies). We have message areas for various
topics as well as spousal caregivers, caregivers to loved ones with Early Onset
Alzheimer's Disease, resources for and by people affected by the disease, and
light-hearted social and humor sections.
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 firstname.lastname@example.org. 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: A New Look at ALZwell
Visitors to ALZwell Caregiver Support will see some major cosmetic changes to the front
page of the website. Now ALZwell and ElderCare Online look more like the
"sisters" that they are. Both have the familiar layout, links and style. But
both have their distinct identities. As the next several weeks roll by, you will see even
more distinct difference as we update the numerous underlying pages.
We are going to share certain components of each website, so for the near future, you will
bounce back and forth between the two. Don't be alarmed! Think of the two websites more as
a Siamese twin -- Hmmm, maybe you better not : )
Meanwhile, there are several new additions to the Anger Wall, as well as more caregiver
stories and responses to questions submitted by visitors.
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 email@example.com.
TOP ALZHEIMER'S/CAREGIVING SITES: Alzheimer's Poetry
The Top Alzheimer's/Caregiving directory now has the capability to rank websites. You can
rate (on a scale of 1 to 10) how much you like the websites. I ask that you visit the
directory and place you vote for ElderCare Online or ALZwell Caregiver Support. Then give
Many people who dedicate themselves to caring for a loved one with Alzheimer's Disease
find inspiration in the experience. The Alzheimer's Poetry website compiles the works of
several poets, including Jerry Ham, Carolyn Haynali, Julie Western-Zuge, Brenda Race,
Dorothy Womack, and Huge MacDonald. These men and women share their feelings and
experiences, and give of themselves so that others can find strength and growth in the
To access "Alzheimer's Poetry," go to http://www.zarcrom.com/users/yeartorem/ADpoetry/contributed.html.
Or you can access it from the "Top Alzheimer's/Caregiving Sites" logo on the
front page of ElderCare Online. As an aside, Dorothy Womack publishes dozens of her poems
on ElderCare Online at
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
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
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
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
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.
The Beacon is published bimonthly by ElderCare Online and ALZwell Caregiver Support. To
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