ElderCare Beacon Newsletter
I receive numerous computer magazines, healthcare professional journals and business periodicals and all of them are screaming about "the Wireless Web," "The Next Big Thing," and how the Internet is changing every aspect of our lives. The way that we provide care to our aging loved ones will be no exception.
You will see more and more high-tech approaches to caregiving as technology becomes more available, as creative people put their ideas to work, and as the number of people face caregiving responsibilities grows. Various Internet applications promise to improve the ability of caregivers to help loved ones who live far away or in isolated communities, but we must never loose sight of the most important characteristics of caregiving: it is an intensely personal and human experience.
I dont think that caregivers are infatuated with products and services that rely on technology to solve their problems. Caregivers need information and comfort, a supportive person to tell them that they are handling the situation normally, the knowledge that they are not alone, and occasionally someone to talk with "who doesnt have dementia." Caregiver needs (now correct me if I am wrong) tend to be for the intangible types of things. Now we all could do a lot better with a cash tax refund and inexpensive diapers and cleaning supplies. But when it comes down to it, the top needs tend to be emotional, spiritual and physical.
So, when you see other websites touting their high-tech applications that allow you to store your loved ones medical information online or provide a detailed personal profile in the hope of "personalizing" your user experience. . . remember that ElderCare Online spends its time and resources building one of the most comprehensive libraries of articles, supportive chat sessions and knowledgeable responses to your questions. We favor the high-touch approach, rather than the high-tech approach.
INSIDE THIS ISSUE
ElderCare Forum: Family Dynamics
ELDERCARE FORUM: Family Dynamics
We all know that managing sibling rivalries and talking with our parents is tough. It's hard enough to be a full-time caregiver and then to have to deal with someone elses baggage and nosiness. How many times have far-away relatives or siblings called to give you advice on day-to-day care? How many times have they avoided talking with you? Other caregivers can help you focus on the most important thing: quality of life.
Here is a sampling of topics that we have been actively discussing over the last two weeks:
- Bad Pennies Keep Returning
If you have experience (either positive or negative) with family members, please share them. You can post under a pseudonym if you dont want to reveal too much about yourself. If you have any success stories on how you got distant siblings to get engaged in caregiving or if you were able to rise about petty squabble, please share those as well! You can access these topics in the ElderCare Forum at http://220.127.116.11/cgi-bin/Ultimate.cgi?action=intro
FEATURE ARTICLE: Breakthrough?: Understanding the Drug Development and Testing Process
Everyone is gratified by news of a major drug breakthrough, especially if it promises help for people who are terminally ill or severely disabled. And if you or a loved one has been praying for such a drug, the news may seem like a miracle. Unfortunately all too often, reports in the press are exaggerated or seriously inaccurate interpretations of scientific findings. Really significant advances happen less often that the popular press (newspapers, the Internet, radio, television, and magazines) would have us believe.
The article includes a series of questions to ask and guidelines to follow when reading and assessing news reports. It also includes a laypersons guide to the scientific process used in testing experimental drugs. You can read the complete article at http://www.ec-online.net/Knowledge/Articles/drugs.html.
MEDICAL RESEARCH ASSISTANT: Merck Manuals Online
The worlds most widely used geriatric reference book, The Merck Manual of Geriatrics, is now available free of charge in ElderCare Onlines Medical Research Assistant. The online guide incorporates an interdisciplinary focus with special information on nursing care, pharmacy issues, patient and family education, palliative care, and end-of-life care. The book has been reviewed by more than 150 experts in all fields of medicine.
This brings to three the number of Merck manuals available through ElderCare Online:
ElderCare Onlines Medical Research Assistant is intended to help you educate yourself about medical problems facing the aging population. This guide provides links to authoritative medical resources on the Internet. It includes links to reference books and databases, Alzheimers Disease resources, drug information and pharmacy services and internal ElderCare Online resources. You can access ElderCare Onlines Medical Research Assistant at http://www.ec-online.net/Assistants/medresassistant.htm.
CAREGIVING TIPS: "When Your Loved One Resists Care"
How many times has your mother refused to change her clothes? Has your father resisted getting out of bed? Has your wife pushed you away when you tried to brush her teeth? Many times a caregiver will be particularly frustrated by her loved ones refusal to help himself. At times she cant help but think that the person she cares for "36 hours a day" is going out of his way to make her miserable! The increasing irrationality of individuals with dementia makes it even harder on the caregiver.
Individuals who resist care and assistance are trying to communicate to you. If dementia, stroke, vision loss, hearing loss or other illness limits ones ability to speak and convey information effectively, body language and physical actions take on a greater role in communication. Refusal to accept care, physical contact or participation in an activity is the individuals way of telling you something.
You can read the entire article, including the common areas of resistance with practical suggestions on how to counter them, at http://www.ec-online.net/Knowledge/Articles/resistance.html.
TOP ALZHEIMERS/CAREGIVING SITES: Undying Love
"Undying Love" is a beautifully designed website that creates an artistic statement while telling a very personal story. In "Undying Love," Patrick tells the story of his mother, Viola. We learn of their close relationship, her journal, the adjustment to the nursing home and ultimately of the slow progression as the disease takes her life. At times I felt like a voyeur, but the warm tone of the article is so inviting Patrick wants you to look and listen. The site is a creative use of audio, graphics and text.
Patrick Davison, 38, has been a Rocky Mountain News photographer since 1996. A graduate of the University of Missouri School of Journalism, he previously worked for The Dallas Morning News, the Pittsburgh Press and the Albuquerque Tribune. Pat and his wife Emiko have three daughters.
To access the "Undying Love" website go to http://denver.rockymountainnews.com/undyinglove
Brenda Parris Sibley has established one of the best clearinghouses for Alzheimers 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 didnt catch your attention last time.
LIVE DISCUSSION GROUPS: Schedule for March
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 5).
March 21 (Wednesday 1:00 to 2:00PM EST) "Coffee Talk:" Host Rich OBoyle welcomes caregivers for a social and networking discussion group on the topic of "Meeting Other Caregivers."
March 21 (Wednesday 9:00 to 11:00PM EST) "Bubbleheads Chatroom:" Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of "Sundowning."
March 22 (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, Alzheimers Disease, or other illness.
March 28 (Wednesday 1:00 to 2:00PM EST) "Coffee Talk:" Host Rich OBoyle welcomes caregivers for a social and networking discussion group on the topic of "Meeting Other Caregivers."
March 28 (Wednesday 9:00 to 11:00PM EST) "Bubbleheads Chatroom:" Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of "Bathing and Personal Hygiene."
March 29 (Thursday 9:00 to 11:00PM EST) "ElderCare Answers:" Host Rich OBoyle leads a self-help group for caregivers on the topic of "Medical Research on the WWW."
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 ElderCare Beacon is published bimonthly by ElderCare Online. To subscribe to this free newsletter, go to the main page of the website at http://www.ec-online.net and add your e-mail address to the white box and click on the "Subscribe" button (just one click!).
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