The Beacon Newsletter


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The Beacon (tm)
“Tell me why – Show me how – Hold my hand”
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June 1, 2001                                                                                 Vol. 3 No. 10
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ALZwell Caregiver Support and ElderCare Online

http://www.alzwell.com and http://www.ec-online.net
Serving the Needs of Caregivers Since 1996
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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,
Rich O’Boyle, Publisher
ALZwell Caregiver Support
ElderCare Online

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INSIDE THIS ISSUE

News and Views: Chip Gerber’s Monthly Column
Prism Caregiver Education Series: Swing Music Promotion
Caregiver Homepages: Carrie’s Place
Grief: A Poem from the Anger Wall
Caregiver Support Network: Directory of Support Groups
Website Improvement Survey: Help Us to Improve Our Website
Activist Alert!: CareGivers FunFest
Chat Schedule: Updates for June
Subscription Information

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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.

I feel it is so important that our voices be heard. That we rise up and speak strongly and loudly about our plight. There are so many terrible diseases rampant in the earth today. I don't ask for all the funds the government has to give, but I am asking for a 200 million dollar increase for Alzheimer's research. This is the amount that the National Alzheimer's Association feels is needed at this time. So I boldly go, asking...and believing that somehow our voice will be heard and that as a result more new research on Alzheimer's research will take place.

Each of us has something that is worth saying -- perhaps just a trip to your local Alzheimer's Association to introduce yourself and to volunteer. Many are waiting to here what we have to say. By Chip Gerber

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!

Over the last 3 1/2 years we have been able to provide our valuable booklets and tools to you free of charge. But as costs have risen to maintain the website, I have had to make the difficult decision to charge for these publications. Over the next two weeks, I am offering them at a reduced price as a "Thank You" to current newsletter subscribers. Use coupon number SUBS5101 when ordering for a 20% discount.

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:
- Choosing a Nursing Home
- Coping With Alzheimer’s Disease
- Managing Medicines Safely

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
circles my grief
like a gypsy’s soul
that CRIES for peace
tears melt suns
and flowers grow
and nobody
owns them...
(from a wall in Montreal and posted to the Anger Wall 5/27/01)

CAREGIVER HOMEPAGES: Carrie’s Place

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:
- Edyth Ann has volunteered herself for a light-hearted class on “How to Bathe a Caregiver.” Attendees may purchase water balloons to toss at her while she participates (in a bikini?) in the bathtub race;
- Attendees are welcome to attend a walk/run to raise money for the causes; and
- Attendees may play Bingo or visit the flea market.

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 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 or http://www.alzwell.com and add your e-mail address to the white box and click on the "Subscribe" button (just one click!).

To unsubscribe from this list, simply (1) reply to this email message with the word "UNSUBSCRIBE" in the Subject: line, and (2) include your e-mail address in the body of the message. Many e-mail programs do not put your complete name@ISP.com in the To: line, so it is impossible to track down your address.

(c) 2001 Prism Innovations, Inc. All Rights Reserved. 

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