The Beacon Newsletter |
Dear Friends, I have been very
busy behind the scenes working on updating the technical infrastructure of the websites
and the message board. Popularity is something of a curse… As our traffic grows, we
have to make sure that the websites can handle all the hits and postings. I am confident
that now we are able to handle our next phase of growth. To date, the bulk
of the traffic to the website have come through referrals from our existing members. So
just keep doing what you have been doing. If you see something that can help a fellow
caregiver to cope with a problem, find answers or relieve a burden, tell them about the
website: print off an article and share it in your support group, e-mail a link to your
personal mailing list, or post a link to one of the online communities where you connect
with friends. We don’t have a flashy marketing campaign to get the word out about
these resources, so it is up to you to help out. This month, I am
running a short survey of our visitors to get insights for our next phase of articles. I
need your direct input to help plan out which types of articles we need to add to the
websites. As always, your ideas and needs are what guides our website development. One
reason you don’t see many bells and whistles, banner advertising, pop-up ads, or
high-tech medical record storage is that these things are a waste of time right now.
ElderCare Online and ALZwell are about providing top-notch information, education and
support with the assistance of respected partners. We are a publishing company, not some
kind of get-rich-quick dot.com. Having said that, a
publishing company makes money by providing information that helps people make decisions,
learn new skills and cope with real-life problems. I invite you to visit our online store
at http://store.yahoo.com/eldercareonline
where you can purchase some of our printed booklets, CD-Rom guides or online tutorials. It
is through the sale of these products that we maintain the free websites. Kind Regards, +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ INSIDE THIS ISSUE News and Views:
Chip Gerber’s Monthly Column +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ NEWS AND VIEWS: Chip Gerber’s Monthly Column I
would like to introduce a new monthly feature for our newsletter, a column by Chip Gerber.
Chip keeps a daily online journal about his daily experiences as a person affected by
Alzheimer’s Disease. Since he received his diagnosis in 1997, he has been chronicling
his thoughts and experiences daily. His unique perspective is online at http://www.zarcrom.com/users/alzheimers/chip.html. May
30, 2001 Tomorrow I will
have the opportunity to be with U. S. Congressman Ralph Regula, who is chairmen of the
House Appropriations Committee. I will be one of several that will have the chance to
introduce ourselves and to discuss why we need more funds from the government this year
for Alzheimer's research. I was able to do this back in March when my wife, Sharon, and I
went to Washington D.C. to a hearing for the same subcommittee and where I was able to
speak briefly, requesting the additional funds. PRISM CAREGIVER
EDUCATION SERIES: Swing Music Promotion We are proud to
offer our educational series of booklets, workbooks and multimedia tools, "The Prism
Caregiver Education Series" through our caregiving websites, ElderCare Online and
ALZwell Caregiver Support. We offer our educational materials in a variety of formats:
printed booklets, portable CD-Roms, or online. -- choose the format that works best for
you! In addition, four
new customers this month will receive a complimentary copy of a great music CD:
“Swing City” or “Swing & Company: Live in Concert.” I loved these
CDs when I first bought them. The music is uplifting and familiar to most people. I think
the music is appropriate for a caregiver or an individual with dementia. Our
Learning Resource Guides have been developed with the goal of enhancing your understanding
of the numerous complex area of caregiving. We believe that if you have a greater sense of
mastery over the skills of caregiving, you can reduce stress and improve quality of life
for both yourself and your aging loved one. We carry seven titles, including: The
Prism Care Assistant Workbooks have been designed to reduce the complications of managing
a loved one's personal affairs. By minimizing the distractions associated with handling
someone else's day-to-day affairs, you can spend more quality time with your loved one and
their healthcare professionals and less time trying to juggle too many responsibilities. The
Custom Packages that we developed demonstrate our understanding of the issues and needs
that our community members face. They are intended to help you deal with specific issues.
We all like some savings, so we reduced the cost by 25% for each of these packages. Visit
our secure online shop to browse through our titles at http://store.yahoo.com/eldercareonline/. Remember,
for the next two weeks we will be offering our loyal newsletter subscribers a 20%
discount. Use coupon number SUBS5101 when ordering! GRIEF: A Poem from the Anger Wall Our sister website,
ALZwell Caregiver Support, hosts one of the Internet’s unique community services. The
Anger Wall has been around for almost five years. Over that time, it has become covered
with the graffiti from thousands of caregivers. Most see it as a place to vent their
frustrations and anger. Others see it as a place to make a strong statement. The all prove
that the Internet is NOT an impersonal technical medium. Every day, the Internet helps
individuals with the emotional challenges that their caregiving role imposes on them. I
have reprinted a poem that was recently posted to the Anger Wall. You can access the Anger
Wall at http://www.alzwell.com/gstbk.html. a dove Carrie’s Place
provides a brief bio of her role as a spousal caregiver to her husband, links, her
favorite quotes, musical selections, poetry she has written about caregiving and
Alzheimer's Disease, and some thoughts on early Alzheimer's from the point of view of one
who worked in community based long term care from 1978 to 1997. The small website
is visually attractive and just the right size to browse through. I particularly like the
article on “Some Thoughts on Early Stage Alzheimer’s.” It provides some
very clear and insightful ideas on the role of the spousal caregiver and relationships. You can surf
Carrie’s website and read her articles at http://members.aol.com/clhowson/main.html.
Or go right to the “Caregivers Homepages” section of ElderCare Online at http://www.ec-online.net/Community/members.htm. CAREGIVER SUPPORT NETWORK: Directory of In-Person Support Groups Caregivers
stay healthy longer and are less stressed through regular association with support groups
that afford practical advice, understanding, and affirmation. We are compiling a directory
of organizations that offer in-person support groups for eldercare and Alzheimer's
caregivers. Please e-mail us at info@ec-online.net
to tell us about your groups. We
have already added links to in-person support groups organized by the Alzheimer’s
Association, Children of Aging Parents and the Long Island Alzheimer’s Foundation.
These organizations are committed to offering the most supportive groups you can find.
ElderCare Online and ALZwell provide online versions of support groups for you when you
can’t leave the house. Take a look at my recent article, “Support Groups Are
Essential to Caregiver Well-being” at http://www.ec-online.net/Knowledge/Articles/supportgroups.html
for more information on the value of groups and how to find one that meets your needs. WEBSITE IMPROVEMENT SURVEY: Help Us to Improve Our Website Each year I take
the pulse of our membership through a short survey. The message board and chatroom serve
as dynamic areas for me to get ideas and insights about ways to make the websites more
focused on your needs. I think the main reason that ElderCare Online and ALZwell are so
popular and well-regarded is that we have such an open and honest relationship with all of
our members. I have composed a
short Q&A survey that I need your assistance with. Basically I am trying to compile a
handful of basic statistics on who our users are – things like “who are you
caring for?,” “what diseases are you concerned about?,” “where does
your loved one reside?,” etc. These types of questions may sound nosy, but they will
give a lot of insight into the types of articles that we write over the next year, the
perspective of these articles (adult caring for parent, caring for spouse, in-home, long
distance, etc.). I am also exploring writing some more articles about diseases other than
Alzheimer’s Disease, so your input is essential. Whenever we collect
survey information, we keep it completely private. We do not add it to our database, nor
do we build a detailed profile of you to use later. To be honest, we don’t even have
the costly and sophisticated software needed to do that. If a company asks us about
advertising on the websites, we use the information to tell them what percent of people
answered certain questions (74% of caregivers are female, or 23% are caring for a parent,
etc.). We only save your e-mail address if you ask that you be added to the newsletter
mailing list (which shouldn’t be an issue for you since you are already on the list). We know
your time is valuable! So, as a special “Thank You” for taking the time to
answer the survey, we will send ten respondents a copy of a great music CD,
“Swing!” I bought several copies to give to our members, thinking that the fun
and nostalgic music would be good for both the caregiver and for individuals with
dementia. To begin taking the
survey, please click here http://www.zoomerang.com/survey.zgi?QCJWDVM5HYB4KHEFD662SN2M ACTIVIST ALERT!: CareGivers FunFest We are now all
familiar with the typical fund-raising activities of organizations serving people in need:
dinner dances, marathons, bike races, 50-50 raffles, and numerous other time-tested
approaches. But this year, be prepared for a different kind of fund-raiser that will help
to provide respite for caregivers to individuals affected by dementia. A group of dedicated dementia caregivers have planned a “CareGivers FunFest” for July 28th and 29th in Burlington, Iowa. The FunFest will give caregivers to loved ones with Alzheimer’s Disease, Pick’s Disease and other related dementias a much needed weekend of respite while enjoying the company of other caregivers and their friends. It will also raise funds to fight Alzheimer’s Disease, Pick's Disease, and to assist needy families with children at Christmastime. You will recognize
a few of the organizers: Edyth Ann Knox (AKA Bubblehead) and Doug Keck (from the CANDID
chatroom) will be the leaders of the event. FUN is the main theme of the weekend: The events are sure
to raise awareness about the needs and issues that caregivers face. We all know the
importance of good humor and respite: these events bring that point home. It is an event
as much for caregivers to take a break, as much as it is for raising money. ElderCare Online
and ALZwell Caregiver Support will donate 20% of the proceeds from sales of the Prism
Caregiver Education Series from May 15 through July 31 in support of this event. You can
browse through our store at http://www.store.yahoo.com/eldercareonline. For more
information about the FunFest, visit http://www.angelfire.com/ia/dougkeck/funfest.html.
Or contact Doug (dougkeck@home.com) or Edyth Ann (edythann@netzero.net). CHAT SCHEDULE:
Updates for June Enter the chatroom
from the front page of either website or at http://www.ec-online.net/chat.htm.
All times are U.S. Eastern Standard Time (GMT –5). Topics are suggested and NOT
required. We always focus on the issues and that our members want to discuss. June 6 (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.” June 6 (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
Respite.” June 7 (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. June 13 (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.” June 13 (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 “End-Stage
Dementia.” June 14 (Thursday
9:00 to 11:00PM EST) “ElderCare Answers:” Host Rich O’Boyle leads a
discussion group for people caring for aging loved ones on the topic of “Finding
Resources.” June 20 (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.” June 20 (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 “Humor: The Best
Medicine.” June 21 (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. June 27 (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.” June 27 (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 “Home Safety.” June 28 (Thursday
9:00 to 11:00PM EST) “ElderCare Answers:” Host Rich O’Boyle leads a
discussion group for people caring for aging loved ones on the topic of “Quality of
Life.” Enter the chatroom
from the front page of either website or at http://www.ec-online.net/chat.htm. SUBSCRIPTION
INFORMATION The Beacon is
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this free newsletter, visit the subscription information page at http://www.ec-online.net/Knowledge/Newsletters/subscribe.htm. You may also go to
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2001 Prism Innovations, Inc. All Rights Reserved. Subscribe Now +++++ Return to Front Page +++++ Read Back Issues |