The Beacon Newsletter |
Dear Friends, I have come to meet so many dedicated caregivers – individuals who routinely put in 36-hour days. It’s not easy, but they seem to be grappling successfully with those “challenging behaviors” (what a cute euphemism) and providing a loving and nurturing home life to their frail loved ones. But I am also finding more caregivers who have taken dedication to the extreme by resisting assistance. Your own resistance to outside help of any kind is not a sign of bravery or even martyrdom. You know I am sincere and caring when I say to you that No one can do it alone. No way. No how. Never. It is in your own best interest to reach out to others for assistance, even if it is a little help with grocery shopping, laundry, or time-consuming chores. Ideally we would all have a support system in place before a crisis erupts. But realistically, most people don’t implement one until they are stretched too thin. Eleanor wrote her story on ALZwell recently: “I have come to the time in our Journey that I am going to have to get someone to help me with the outside work. I have to spend one on one time with my Husband now. Making the decision to get some help is a big step.” An anonymous visitor to the Anger Wall wrote: “It is time to consider a nursing home. I can not do this alone any more. And I am lucky to have support from my spouse and a respite program for her.” We hope that we can help you to develop better relationships with your healthcare and professional advisors; connect with online and offline support services; and maintain your own personal time and space. These are the keys to successfully sharing the challenges of caregiving. Kind Regards, +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ INSIDE THIS ISSUE News and Views: Interview with Jacqueline Marcell +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ NEWS AND VIEWS: Interview With Jacqueline Marcell Jacqueline Marcell cares for her father with Alzheimer's Disease. She has found that a combined approach of proper medication, tough-love and behavior modification has helped her to deal with her father's aggressive behavior. She is the author of "Elder Rage or Take My Father… Please!" On April 26, 2001, she took some time to answer some questions about the management of problem behaviors and the challenges of caring for one's parents. You can read the complete interview at http://www.ec-online.net/Knowledge/Articles/marcellinterview.html and browse some other resources such as the author’s website and read excerpts from her book, Elder Rage. THE FORUM UPDATE: New Bulletin Board Features We have seen substantial growth in use of the message board over the last few months. This has resulted in numerous supportive connections, shared knowledge and wisdom, and relief from isolation for our 200 registered users (and hundreds of other lurkers). With the added traffic, I
have had to upgrade to a newer version of the message board software. This is a good thing
because it comes with some additional neat enhancements: -
Member Ratings: A fun way to give
credit and recognition to the many caregivers who share their wisdom and experiences. -
Customized Personal Profiles: Now
you can include brief information about your caregiving situation in your profile so you
can connect with others with the same interests. -
Easy Code Formatting: Now you can
easily create hyperlinks, bullet points, and lists. The new version has a
different website address. Your old bookmarks will no longer work. The new address for the
Forum is http://216.122.139.136/cgi-bin/ultimatebb.cgi Some of the icons and
graphics have changed a little bit. But the underlying message board, with our fun and
compassionate hosts is still running smoothly. Please come back for a visit and join back
in the conversations. PRISM CAREGIVER EDUCATION SERIES: Booklets and Workbooks Now
Available 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! 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! ALZHEIMER’S ANSWERS: Diagnosing Alzheimer’s Disease: Tests, Procedures, and Issues This month we continue our popular Alzheimer’s Answers series with a special presentation by Dr. Scott Small on the topic of “Diagnosing Alzheimer’s Disease: Tests, Procedures, and Issues.” Dr. Small is from the Taub Institute for Alzheimer’s Disease and the Aging Brain at Columbia University. Please try to join us for this enlightening seminar on Friday, May 11 from 1:00PM to 2:00PM EST (GMT –5). You can enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm. The casual but highly informative session will cover topics such as: - Which tests and procedures are used to diagnose Alzheimer’s Disease? - Who is best able to provide a reliable diagnosis? - Why is an early diagnosis so important? - What changes now that you know? If you are unable to attend the chat session, you may e-mail an advance question to us at askcasey@ec-online.net. I will try to submit the questions throughout the course of the Q&A portion of the chat. The complete transcript will be posted to the website as soon as possible. Please try to join us for this enlightening seminar on Friday, May 11 from 1:00PM to 2:00PM EST (GMT –5). You can enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm. WEBSITE UPDATES: Privacy Policy Updated Every trustworthy website needs to prepare and display its policies regarding how it collects, stores and shares the information of its users. We have had a policy for over two years (beginning when ElderCare Online grew from a homespun hobbyist website to one of the most popular eldercare destinations). I wanted to show that we took YOU seriously and that has helped for you to take US seriously. Our policy is very straightforward: - We need to collect certain information to send you the newsletter or mail you our other caregiving products. That information is used only for that purpose. - We look at our membership and survey information “in the aggregate” to better understand demographic trends and issues. - All information is stored on a secure computer. - We consider our mailing lists (e-mail and products) to be proprietary resources and do not rent our list out to marketers. - We require any partners to adhere to the same (or more stringent) standards as a condition of partnership. - If required by law enforcement officials, we will release all necessary information to them. Our policy is clearly displayed at http://www.ec-online.net/about/privacy.html. The policy applies to Prism’s Caregiver Education Series customers, ElderCare Online members, and ALZwell Caregiver Support visitors. I welcome all comments on the policy to rich@ec-online.net SOLUTION SETS: Glossary of Eldercare Terminology We have launched an interactive Glossary of Eldercare Terminology to provide you with easy-to-understand definitions of key terms and phrases that you will encounter through your caregiving journey. When I first began writing in the healthcare field in 1990 I would sit with my editor for a few hours each week for tutorials on the nitty gritty details of the Medicare. These seminars were boring to say the least (I actually dozed off in front of Chuck the first time). I learned quickly – I would drink a few cans of Coke before meeting with him. What I learned from Chuck has proved to be so valuable. I am not saying that all of us have to have the sort of mind-numbing detailed understanding of Medicare, Medicaid and public health programs. But it does make sense to know some key terms without having your eyes glaze over. A little bit of education goes a long way. You can access the newest interactive Solution Set at http://www.ec-online.net/Assistants/glossary.htm. CAREGIVER SUPPORT NETWORK: New Poems by Dorothy Womack Dorothy continues to pen warm and insightful poems. Her wisdom and spiritual grounding serve as a comfort to so many caregivers. Take some time each day to read some of her poetry published on her personal pages in the Caregiver Support Network at http://www.ec-online.net/Community/Activists/can.htm. KEEPIN’ UP WITH ALZWELL: Recognition, Questions &
Answers, and Caregiver Stories The National Alliance for Caregiving recently ranked ALZwell among the top caregiving websites, saying, “There is so much here, it is truly a unique and valuable site where caregivers feel warmly welcomed and listened to.” That is such a great compliment to Susan Grossman’s work. I strive to continue to build and grow on her foundation to make ALZwell a responsive support service that meets the needs of dementia caregivers. Dr. Franklin Cassel and I recently updated the Questions & Answers section of the ALZwell Caregiver Support website. We also added some very personal stories and the reflections of other caregivers. I see these features of ALZwell as two complimentary resources: one that focuses on very practical issues and needs; and the other that serves to unite caregivers in a common journey. I welcome each of you to submit your own stories to the website and the Anger Wall as a way of releasing internal feelings and as a way to share with other caregivers who may feel alone or misunderstood. Visit ALZwell Caregiver Support at http://www.alzwell.com. TOP ALZHEIMER’S/CAREGIVING SITES: Kelley’s
Alzheimer’s Garments I recently received a few e-mail requests for information about clothing for individuals with dementia. And as coincidence would have it, a neat shop for this type of garment was just added to the Top Alzheimer’s/Caregiving list. Kelley’s Alzheimer’s Garments at http://www.alzheimerstore.com/ sells the jumpsuits in a variety of fabrics, colors and styles. The zipper-up-the-back jumpsuit style makes it an ideal garment for someone who disrobes inappropriately. 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. CHAT SCHEDULE: Updates for May Enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm. May 2 (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.” May 2 (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 Alzheimer’s Disease” May 3 (Thursday 9:00 to 11:00PM EST) “ElderCare Answers:” Host Rich O’Boyle leads a self-help group for caregivers on the topic of “Caregiver Emotions.” May 9 (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.” May 9 (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 “Maintaining Personal Hygiene” May 10 (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. May 11 (Friday 1:00 to 2:00PM EST) “Alzheimer’s Answers:” Dr. Scott Small from Columbia University leads a Q&A session on the topic of “Diagnosing Alzheimer’s Disease: Tests, Procedures and Issues.” If you are unable to make it, please submit advance questions to askcasey@ec-online.net. The transcript will be posted onto the website the same day. May 16 (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.” May 16 (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 Tips.” May 17 (Thursday 9:00 to 11:00PM EST) “ElderCare Answers:” Host Rich O’Boyle leads a self-help group for caregivers on the topic of “Understanding Geriatric Depression.” 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. Subscribe Now +++++ Return to Front Page +++++ Read Back Issues |