The Beacon Newsletter


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The Beacon (tm)
“Tell me why – Show me how – Hold my hand”
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June 15, 2001                                                                                 Vol. 3 No. 11
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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,

All too often we focus on the challenges, burdens and tasks associated with our caregiving responsibilities. Sure, it is difficult, especially the added pain of Alzheimer’s Disease or end-of-life caregiving. But there is something missing from the discussion of caregiving (even on this site). There are rewards and benefits to being a caregiver. By refocusing the discussion to emphasize the benefits of caregiving, hopefully we can come to accept these changes and learn and grow from the experience.

I will be the first to admit that ElderCare Online has a heavy focus on the practical aspects of caregiving – and these necessarily deal with managing problem behaviors or coping with difficult issues. Nevertheless, we strive to emphasize positive ways to improve quality of life. As a caregiver to a parent or spouse you have the opportunity to grow through your experience. Each of us can make the choice about whether to make the best of a situation or to focus on the negative. Too often, there is family and emotional baggage that push us down the wrong path. Regardless, there are benefits to caregiving: One can reconcile oneself for past failures within the time allotted while your loved one is still alive; one can reach a greater self-understanding by being open to healing rifts and examining oneself; and one can complete the cultural cycle within a family of caring for a dependent loved one.

I recently attended a conference for professional caregivers. One speaker shared a quote on cancer caregiving that I thought was very appropriate for our members. And I think it is especially powerful for Alzheimer’s caregivers. “Cancer offers the gift of time, its only kindness.” We know  that our loved one will pass away – but as their caregiver, we have the opportunity to make the most of that time. Time truly is a gift, but we have to use it wisely.

I don’t want to sound na´ve or out of touch: the pain and sacrifice do not go away completely. It just allows the caregiver to manage day-by-day with an improved frame of mind. Sharing one’s emotions with family and friends and connecting with other caregivers can enhance the experience even more.

Kind Regards,
Rich O’Boyle, Publisher
ALZwell Caregiver Support
ElderCare Online

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INSIDE THIS ISSUE

News and Views: Latest News for Caregivers
The Forum: Welcome to New Members and New Links
Top Alzheimer’s/Caregiving Websites: Lyle’s Page
Feature Articles: Ginkgo Biloba and Herbal Supplements
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: Latest News for Caregivers

We have selected about a dozen new articles on health, caregiving, research, and Alzheimer’s Disease topics that we think you might find interesting. We read through major news sources to bring you high-quality articles.

Some of our top headlines include:
- Discovery of Alzheimer’s Drug May Spur New Meds
- Needed: Brain Donations
- Sleep Apnea Linked to Alzheimer’s Gene
- Large Communication Gap Between Doctors and AD Caregivers

You can read these articles and follow links to more detailed resources mentioned in the articles (such as medical journals and related websites). The briefs are posted to the Forum on a regular basis. You can access them here: http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=26

THE FORUM: Welcome to New Members and New Links

Our homespun message board continues to serve as a support network for our members. Every week we enroll about a dozen new members who are looking for a sense of community and understanding. It’s not easy to find an open, supportive and sincere group of people who you can trust and feel comfortable with. And it is doubly hard to find them on the Internet where there is so much “flotsam and jetsam” – not to mention spammers, scammers and marketers.

We spend the bulk of our time and energy making sure that our community forums – whether the chat room or the message board – provide you with that sense of security. Our moderators, Sugarlips, Edyth Ann, JulieSiri (bluefeather), Peter Silin, and Casey (that’s me!) are available at specified hours and throughout the course of the day. At any given time, we have seasoned caregivers who are browsing through the forum, sharing their insights, and relieving your isolation.

Please welcome some of our newest members (and this isn’t nearly all of them!):
- Lane
- Cher50
- H. barrie
- LTCei
- ggorman
- for my mom
- and many others

I would just like to add a quick note about a new website maintained by the National Council on the Aging. “Benefits Checkup” is one of those second-generation websites that provide an enormous service to family caregivers. It is a free, easy-to-se service that helps older adults to quickly identify programs that may improve the quality of their lives. Family and friends can also obtain facts about benefits that their loved ones may qualify for. Chances are, you will be surprised to learn what benefits are available to you, regardless of your income. You need to input quite a bit of information, but afterwards you will have a comprehensive picture of the benefits that you are eligible for. The service is managed by a respected non-profit organization, so you should feel confident about the security of the data you enter. You can access the website at http://www.benefitscheckup.org/.

You can visit the Forum message board at http://216.122.139.136/cgi-bin/ultimatebb.cgi. Remember that you don’t have to actually register to participate. It just opens up some tools that help you use the Forum better. For example, the Forum will mark which messages you have not already read, allow you to communicate by private, secure e-mail with other members, and become eligible for free caregiving books.

TOP ALZHEIMER’S/CAREGIVING WEBSITES: Lyle’s Page

In honor of Father’s Day (celebrated here in the USA on Sunday, June 17), I have selected “Lyle’s Page” as our featured caregiving website. The website was created by Julie Western-Zuge for her father and family. Many of you will see shades of our own experiences in her narrative. I find the poetry and the personal commentary to be warm and touching. Julie and her sister Carol have a talent for writing that their father’s disease has stimulated. Lyle’s wife of 60 years, Joyce, deserves a special place on their website. It is clear that she was his hands-on caregiver and soulmate.

As an educational resource it is valuable. I look forward to reading the new articles that they are writing. The article on feeding tubes is very informative. Knowledge coming from the mouth of a caregiver always seems to have more impact than when it comes from a doctor or academic. Some of these issues are so difficult to handle – you get the medical opinion and then you have to work through the decision yourself. Having the personal experiences of others to help guide you is a precious gift.

You can visit Lyle’s Page at http://www.lylespage.homestead.com/

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.

WEBSITE IMPROVEMENT SURVEY: Help Us to Improve Our Website

I am winding down the annual website improvement survey. Many of you have responded with very positive feedback, including some great ideas for improvement. Please consider completing the survey if you haven’t done so already. You input is essential to making sure that we stay on course and provide you with all of the information, education and support that you require.

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

… or access it directly from the front page of the website at http://www.ec-online.net

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 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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